Alzheimer's Disease as described in Bob Seger's "The Long Goodbye"

Here are the lyrics to Bob Seger's "The Long Goodbye" from "Face the Promse" (gear publishing/hideout/Capital records/2007) with my comments on how the lyrics pertain to my friend's experience with Alzheimer's disease.

"The silent fall of evening snow
Another thing you can't control
Does it chill or warm your soul tonight?"


My comment: 

It really is amazing how Seger nails this disease. In this verse, the pivotal word is "tonight". With a person who is experiencing AD, the "silent fall of evening snow" can indeed either warm the soul or chill it. It totally depends on the day; even on the moment. 

A memory can bring back good feelings and act as a magnet for MORE good feelings or the opposite can happen. A memory can bring back a flood of guilt, worry, fear, sadness, confusion, and another opportunity to wonder why the people the person loves are no longer here. My friend (the lady I am with 24-7) lost her husband of 54 years and her 47 year old son within 13 months of each other. She was already in her 80's....

So, I know what it is like to try and figure out if an anniversary, a television show, rain, dinner, or any other variable is warming my sweet friend's soul or is chilling it.  It is heart-breaking to watch and it must be excruciating to experience. But, there are hidden gifts, spiritual growth, and a kind of elegance in aspects of Alzheimer's disease. That is not a rationalization. I see it. Of course, it is hard to keep my eyes on that when I see so much of the other side of it. 
 

"You've become a mystery
Will I earn your honesty?"


 My comment:

Again....Seger nails it here. It IS a matter of earning the honesty/trust  of someone with Alzheimer's disease. I am not sure what it is like in the later stages but in the early/moderate stages, it is very important to earn the person's trust so that she/he can tell their truths to you "I know you are nice and I love you but I am not 100 percent sure of who you are right now" "I had a bad dream and was even sleepwalking" "Where is my (deceased) sister?" "Is my son (deceased) here?" "What day is it?"

The person has to trust that you will not be upset when he or she asks these questions. They have to trust you will not be shocked or worried. It is a ballet with verbal, physical, emotional, and energy aspects. One bad move or slip can take a day or a week to correct and help the person trust you again. 

Unfortunately, some aspects of the disease are just there and nothing you do can save the person from experiencing them: paranoia, a feeling that you are an impostor, a fear to share what they are thinking or experiencing internally...the paranoia that manifests when loving family members are forced to be the "bad guys" and do necessary things like take away driving privileges, set financial controls, oversee portfolios, watch out for possible legal problems, etc. The sad aspect for family members is that their good works are often temporarily met with resistance, fear, and anger. Sometimes it lasts a long time. Sometimes it goes away and then reappears.

"I'll never know if we agree
If you're not here" 

My comment:



To me, this pertains to talks about things like food, water, getting enough rest, and talking about pain. My friend and I have dozens of conversations about the need to drink enough water, eat enough, get enough rest. But she only remembers the conversations that take place when she is "here". And this is the early/moderate stage!

"And we travel separate roads
And we carry different loads
And in the end we stay or go

The long goodbye continues on
Through fog and rain and far beyond
You stay awhile and then you're gone again"



My comment:
This is definitely part of our experience even in the early/moderate stage. I know it will be even more like this as the disease progresses. In our current reality, this speaks more to the "going away" as events rather than what is "normal". Right now, my friend takes little trips away from me but with enough love and conversation and some coffee, she comes back..

"I look into your restless eyes
You turn away it's no surprise"

My comment:
 These are the lines that have been sending me into crying fits today. "I look into your restless eyes; you turn away it's no surprise"---the only difference is that in these moments it is me who turns away. 

My friend is brave and looks right into my face with love and fear and hope and sadness and confusion. It is so raw and so honest that I have to turn away or hide in my room for a little while sometimes (after making sure she is okay and knows where I am if she needs me, of course)--

Sometimes I look into her eyes and her eyes look so hot and TOO clear. Hard to explain. Its as if they burn with something--not awareness or anything--something feverish and unhealthy and powerful. 

So I try to meet that loving gaze that comes along with this "too clear/unhealthy" look and we go with where she is and what she wants to talk about. It is hard to hear the same story (literally) hundreds of times but I am trying to go with her and pretend I am hearing it for the first time. It is not the talking that gives my friend comfort. It is the fact that I am listening.

The only strategy for Alzheimer's is LOVE. 

The medicines are extremely helpful. At least they have been for my friend. And there is a prescription nutritional supplement out now that delivers a different kind of energy or food to the brain of an Alzheimer's patient. That is promsing--

It is obvious that another major component of the strategy is assuring physical safety while "allowing" the person to hold onto independence and do things that do not jeopardize their physical being. This is kind of like being there while a child is learning to walk (thinking of my youngest niece as a baby)...or ride a bike...or deal with high school (like my oldest nephew) or young adulthood (like my oldest niece ) or with the serious illness of a parent (like my youngest nephew ). We are there for them but it is their deal, a step along their individual path. So hard but so necessary not to intervene unless it is necessary. Same way with someone with Alzheimer's who is trying to hold onto as much of who they were/still are and what they used to do as possible.

But above all else, it is love that keeps the AD at bay or prolongs good moments/days/weeks. It is also Love that, eventually, will have no impact on the disease. But it is my knowing that the person with Alzheimer's always feels your love in some way, at some deep level which is inaccessible to our ability to perceive it. Even when they can no longer evidently feel our love, we still extend it by being present and doing our best to keep them safe..and to serve as their protectors and advocates within the health care system etc....and giving hugs when they can allow it.

It is not easy to do what I do and I do it imperfectly but I do the best I can. I love my friend SO much. It is not easy for my friend's family to do what THEY do and it is clear how much they love her as only family can love a member of the family. They also deal with MY little meltdowns when I start thinking too much about me and forget that I am here to be of service and that I will be okay no matter what happens. I honor and respect my friend's family. I could not do what I do if they did not do what THEY do.

My friend and I are going to have coffee in a few minutes and I am going to listen to stories I have heard hundreds of times as if hearing them for the first time. And maybe I can help her figure out what is worrying her and help her to get some freedom from those worries. 

And while we are talking, I will be sitting in the presence of an evolved spiritual being and will no doubt learn a lot. Being in my friend's presence is a spiritual gift and an honor. She is the definition of humility and is one of the most loving spiritual beings having a human experience that  I have ever met.


Oh---I think it is important to point out that I am not trying to convince anyone of my divinity or perfection here. I do believe we are all divine and all happens for a reason. However, I continue to evolve and grow and learn while doing my imperfect best to be LOVE for my sweet brave friend----Trust me. Sometimes I want to run. But there will be time for running later, after....

"I wonder if it's even wise but I'm still here"

This is the scary line. I know that my friend's disease may progress to the point where this question will be valid. For now, it is not. I know I am supposed to be here and while I deal with my worries about my future, about her future, about how to help her feel as comfortable and loved and secure as I can today....I reach deep and try to BE LOVE.....and to stay in the moment. And to trust that the universe is unfolding in perfection. Even when I don't like the way it unfolds! 


My spirit and thoughts and love and hope are with everyone with this disease and all those whose paths have led them to be caregivers for Angels like my friend.

Maybe we are not here to help them. Maybe they are here to teach us and guide us. I know that my friend has done more for me than I will ever be able to do for her. She is the embodiment of what a human being can be----soft, determined, brave, vulnerable, loving, respectful of all forms of life, spiritual, non-judgmental, hard-headed (lol), and resilient. 

This woman still manages to be kind after experiencing WW2, the passing over of all but one sister, the passing over of her husband and son....and she still finds things to smile about and practices radical kindness.....I am blessed to have her in my life and to attempt to be of service to her while remaining unattached to the outcome (W. Dyer. The Power of Intention. Hay House Publishing).

"The Art of the State" (and possible solutions to the extermination of the poor and the decimation of the middle class)

I only see a few possible solutions to the current situation:

1) A massive spiritual movement which will reach the souls of our overlords and re-awaken the humanity and spiritual power/empathy within them. Change would take place at all levels. This would, in my opinion, be the most elegant and powerful scenario.

2) ●Intensive regulation of all corporate, financial, and insurance entities. ●Televised Senate hearings which will expose the greed, corruption, and ponzi schemes which have created the deck of cards we refer to as our financial system. ●Senate hearings exposing the role of government in the destruction of the middle class and the apathy which is allowing the poor to die off. ●Senate hearings which will expose the many ways in which cold hard cash is behind virtually everything done by politicians---all would be examined (including the fact that Goldman-Sachs contributed nearly a MILLION dollars and was the second largest contributor to the election fund of our current Democratic president>>>thank you OpenSecrets.org>>>). Both parties would be held accountable and “follow the money” would be the motto.

3) An organized citizen-led movement to compel our news media channels to utilize sane, vetted, legal, and ethical wiki-leaks type whistle blower information streams to inform the American public about the truth. ●This will require tech experts, legal teams, an ethics panel or panels etc. While protecting TRUE national security information, all other information should be on the table and be available for citizens to access. ●This will, of course, require many to go to prison and/or face disgrace, financial devastation, and ruin. ●For those active in this cause, such cases will be understood as representing the cost of participating in a truly open and free society.

4) Huge protests and citizen-led demonstrations which will show our overlords that we are aware and awake. This is confrontational (albeit peaceful) political action. ●If the homes and businesses of CEO’s, CFO’s and board members of banks, other financial institutions, insurance companies, corporations etc. are the sites of peaceful protests, these individuals may be compelled to look within and then help put an end to the current redistribution of wealth from the middle class to the wealthy and the decimation of the poor. I would suggest that if this option is used (either as a singular option or as part of a larger movement), an excellent consultant would be Jamie Court (author of “the Progressive’s Guide to Raising Hell” >>Chelsea Green Publishing<<.)

5) Revolution. Hopefully a peaceful one….

In other words, THIS SH&% HAS GOT TO STOP!