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Alone Surrounded By People
MrToad
Posted: Thursday, February 21, 2019 10:13 PM
Joined: 7/13/2017
Posts: 444


As I made a vat of the Sicilian meat sauce she taught me how to make, I got thinking about my Aunt Fran. She died of Alzheimer’s, many years before the Unwelcome Journey with my wife began. In retrospect, I now realize that Fran’s journey was perhaps more awful, because it was essentially solitary.

Fran, in her 80’s, had lived alone for many years in Manhattan’s Greenwich Village.  My siblings and I had infrequent contact with her, by phone—perhaps once a month or two. So when she repeated some stories or inquiries during these sporadic contacts, we did not think anything of it. Our limited observation did not suggest it was more than the occasional lapse that everyone experiences. And since my sibs and I  were not there in New York City, we did not see Fran's apartment. She was a lifelong fussbudget, and our image was that she was living in a neat-as-a-pin apartment.

So we were Oh My God! surprised to learn that when the police and medics broke into her apartment looking for her, they found her immobile, filthy, and dehydrated in the most squalid situation you can imagine. The doorman said later that he’d seen her go for midnight rambles around the neighborhood in the past in her soiled nightgown, but he’d had no family contact information for her. Nor did Fran have any neighbors who cared enough to lend a hand.

She was alone. Surrounded by millions of people, but alone as she wandered further every day into that other world.

My family were able to place her swiftly in a nursing home that accepted persons with dementia (this was before there were "Memory Support Centers"). I travelled to New York one time shortly after and visited Fran there. She was very far along. She could barely walk, and she had reverted exclusively to her childhood Sicilian (though she spoke perfect English in Better Days). She did not recognize me, the nephew she used to dote upon.  I did not then know how to practice what I now preach. I did not know how to relate to her; she was so different. I could have talked about the long-ago outings she took me on when I was a kid. I could have told her how much I enjoyed those trips, and liked her company. But I didn't know to do that. I was just too appalled at seeing how diminished my Aunt seemed to be.

I now know I should have borne in mind the image of the glass half full vs. half empty, realizing that in truth, the glass is always full: you can see the water, not the air, but it's there. Just so with people. One should pay attention not just to what’s missing, but to what’s still there, even if you can’t always see it.

I behaved like the toad my sweet wife loves to call me. I do wish I had been wise enough to treat my Aunt better at that time—but any form of empathetic dementia awareness was still far in my future. So I did not give Fran any comfort in those days, nor did she have any noticeable flow of visitors in the three years she lived at that home. She was mechanically “cared for” to be sure, but not by anyone who knew her or had any specific personal or real human connection to her. Fran was “safe”, but still alone, surrounded by people. Doggone it, Alzheimer’s is awful enough. How much more awful it must have been for Fran —still a person deserving respect---to travel those last years so isolated. 

No this is not about a retrospective guilt trip. I didn’t know any better at the time. But the lesson to be learned for me is to make all the more sure that I now do everything I can think of to prevent any person with dementia or family member from needing to face it alone.  

 


Jim Broede
Posted: Friday, February 22, 2019 6:18 AM
Joined: 12/22/2011
Posts: 5462


An agonizing but good musing. Take that as a compliment. The courage to face reality. Head on. --Jim
jfkoc
Posted: Friday, February 22, 2019 9:04 AM
Joined: 12/4/2011
Posts: 18951


Awareness....gained, perhaps,  only from experience. 

OT.......is the Sicilian sauce the one used in the Lasagna? If not would you share?


ruthmendez
Posted: Friday, February 22, 2019 10:54 AM
Joined: 9/8/2017
Posts: 2314


This is a really good story that you shared. Thank you.

chrisp1653
Posted: Friday, February 22, 2019 7:10 PM
Joined: 1/23/2017
Posts: 1219


Back in the days when my Barbara and I could have real conversations, an oft repeated topic was her childhood and her two prior marriages. From those two marriages came three children, and enough emotional baggage to fill The Orient Express. Barbara didn't learn how a normal childhood should be, because she never had one. She never learned any of the skills that might have prepared her for being a wife and mother. What she did learn was how a belt feels when it's used as a whip. She learned, as much as it can be learned, how to avoid antagonizing an overbearing and unstable husband. By the time we had finished our dating period and were married, I had been treated to a wealth of information that never failed to leave a sour taste in my mouth, but, on a better note, we were both on our individual and collective journeys toward a common goal of wisdom.One thought that I made up, ( I think, ) was this : When you want to beat yourself up because of the things you did, or didn't do in some past life experience, ask yourself if all those bad results were intentional. If the answer is no, then remember that you were doing the best you could, with what you had to work with, at that time in your life. I know it sounds like an over simplification, but I think it's completely true. Most of us have the best of intentions, but we can be woefully under educated for what life throws at us. Sometimes learning is S L O W, but as long as we really are learning, then looking back is only a way to gauge our progress.

Kudos to Mr. Toad for learning, and for passing on that knowledge.

 


MrToad
Posted: Friday, February 22, 2019 9:28 PM
Joined: 7/13/2017
Posts: 444


Chrisp:

Thank you, I so much agree. In all matters, we can always only do our best at the moment. We can and should glance back sometimes for lessons-to-be-learned, but you are so right, we have to face forward, because for us, unlike for our LO's, Time only goes in that one direction.

 

jfkoc: --yeah, that's Fran's "spaghetti and meatballs" or lasagna sauce. My concept of her as a fussbudget was confirmed the time I tried to honor her when she visited Kathleen and me in Alabama, and I made "her" Lasagne for her. Well, duh, of course it was not nearly as good. Even if I had been as good a cook as she, did I think the "Italian" sausage I got in Alabama was going to compare to what she got down her street in Little Italy? And fresh mozzarella? What was I thinking? 

 


Jim Broede
Posted: Saturday, February 23, 2019 11:03 AM
Joined: 12/22/2011
Posts: 5462


I really like this thread. Very much. I’ve been reading and re-reading it. Because the posts by Mr. Toad and Chris are so engaging. So personal. So enlightening. Gets me thinking. Gets me to know each of you. Better. Better. Better.  More. More. More.  Keep it up, guys. --jim


MrToad
Posted: Saturday, February 23, 2019 1:09 PM
Joined: 7/13/2017
Posts: 444


My Aunt Fran was born in 1914 in Sicily, raised in Brooklyn NY by immigrant parents who made their livings with their hands. Fran “went to business”, initially serving clerical roles before gradually earning some business management responsibilities. She never married. (Reportedly she spurned the man who proposed because he wore black shoes with brown pants.) As I said earlier, she was sweet and generous to me and others in our family, but she was “old school” in many ways and not easy to get along with. She did not approve of my living with Kathleen for a little while before we got married. (For those of you out there who also don’t approve, I respect your opinion, but I humbly point out that my marriage has lasted in perfect faithfulness for 43 years and is stronger than ever after 11 years of caregiving)

Given Fran’s background, I now speculate about whether Fran had any self-awareness about her Alzheimer’s as it began. I know that this is a characteristic that is as variable as humanity---some people are very alert to the very beginnings of it, and then react very openly, as many wonderful folks on these boards have shown us. Others “understand” that it is happening, but with some questionable degree of free will, they leap in the Egyptian River—Denial. Others, like my sweet wife, are categorically unable to recognize that they have any impairment. There’s even that strange term for that—anosognosia.

I’ll never know whether Fran had any self-awareness of her situation or not. But given her background, my sad guess is that if she did have any awareness of her worsening condition, she likely felt not just fear, but also shame.  I remember from conversations with my mom, i.e. Fran’s contemporary, the strong sense of disgrace that still at that time attached to people who used to be called “senile” (whom we now know were suffering from a specific dementia disease such as Alzheimer’s).

Of course, there was not then any good reason for any stigma, any shame, to be associated with dementia. It is socially irrational and wholly unwarranted. It is diminishing, but it persists.

Alzheimer’s is  A Disease, Not a Disgrace™.    

But, again, how irreparably sad to think of the months, perhaps years this innocent woman spent, perhaps aware at some level of what was slowly happening to her, and ashamed of it.

No one should ever face dementia alone, or believe they have to.