The Elderly, Poverty, Alzheimers — And Me!

I started to write this piece with a pounding headache. Sitting in the LA Progressive office I share with my partner and husband, Dick – doing the regular stuff we do to publish everyday –I was feeling the weight of the world on my shoulders.

Dick, sensing that something was wrong, asked – in the kindest way possible – what was the matter? For reasons I don’t completely understand, his simple query set off a rare explosion.

I erupted like a volcano. Using words I abhor, with tears streaming, spital spewing, “F” bombs flying, I responded with a tirade – half crying, half yelling – that ended with “I’m sick of this sh*t!!”

I apologize for the language but now that I’ve dropped that on you, allow me to do for you what I had to do for Dick. Let me backup a bit.

I’ve only written briefly about this, but some of you may remember that my mother has Alzheimer’s. My younger sister, two brothers, and I have known about my mother’s condition for about four years. For two of those four years, she was in the early stages of the disease. Today, she has shifted from mild dementia to the moderate stage of Alzheimer’s disease.

To look at her, you’d never suspect a problem. She is attractive, physically fit, and still concerned about her appearance. She can laugh, joke, sing, make herself a sandwich, water the lawn, feed the cat, and do countless other things, but her short-term memory is shot. She can remember the address of the home in The Bronx she lived in at age five, but she can’t recall something that happened five minutes ago. She doesn’t know if she’s had breakfast or if she’s taken her medication.

If she walks 500 feet down the street, she won’t remember where she is or how she got there. She doesn’t know the year, the month of the year, the day of the week, or the time of the day. She avoids conversing with people outside of the family because she knows she repeats herself and feels embarrassed.

Although this may seem manageable, she also does things that can be dangerous. She has gotten into cars with strangers trying to get “home” even though she hasn’t lived there on her own for several years. She has almost set the house on fire a couple of times.  So, she must be watched or cared for 24/7.

For a while, my father and brothers alternated as her constant companions. But we all knew that that wasn’t sustainable, especially as the condition progressed. And it has, so now my sister and I are sharing the responsibility of caring for her.

Having to care for my mother has opened my eyes to a world I had not considered. Isn’t that typical? We don’t imagine what people are going through until we walk a mile in their shoes. I will write more about this mile I’ve been walking with my mother later. But for today, all I will say is that the American healthcare system and social contract is broken beyond anything I could have imagined.

Five years ago, if someone were to tell me that the United States treats its elderly like discarded trash I would have ignored them. Today, I’m seeing it with my own eyes. If we cared enough to do some investigating, I suspect we’d find quite a few homeless people are homeless because first they had dementia.

Turns out if you don’t have access to resources – at a mininum $4,500 a month – and you have Alzheimer’s or some other dementia-causing disorder, you and your family are screwed.

So back to my volcanic eruption and my loving, patient spouse.

Dick and I spent our day publishing the LA Progressive, working on a few causes, and looking for Adult Day Care for my mother. This was our first foray into the world of Adult Day Health Care (ADHC).

I retrieved a list of ADHC providers from the California Association for Adult Day Services (CAADS) website. In Los Angeles County alone, there are hundreds of these centers. The vast majority of them are owned and operated by for-profit organizations.

My mother - Glenda Hooker

My Mother – Glenda Hooker

Without calling beforehand, we dropped in, unannounced, at three of these facilities. Two of the three were closed and the one that was open should have been closed. I wouldn’t leave a dog there.

We’ll continue our search during the remainder of the week, but the big lesson for me on our first day of actually visiting these places is the toll the lack of funding is taking on our seniors suffering with dementia and their families – especially those who lack resources.

As the day progressed, thoughts of how the future is going to play out for my mom and our family were plaguing me. I thought about the social contract, the terms of which are vague to most of us until we need it. I thought about my father and Dick’s father who are both living on pensions. My parents divorced more than 40 years ago. It is only because of his love for us and my mother that my father has spent the last two years helping to care for her. I am forever grateful for what he has done. But he is also aging.

Dick’s dad just celebrated his 95th birthday. Dick and I went to Florida a couple of weeks ago to attend my father-in-law’s big birthday bash organized by his wife and others at the independent care senior community where they live – in style!!

It was a great party. They are living well in a community planned for the final phase of life. Their surroundings are beautiful. The staff is kind and helpful. There is plenty for them to do. They are safe and they are happy. You really couldn’t ask for more.

My father-in-law and his wife love living in this thriving senior community. At the birthday party, lots of their fellow residents took turns standing up and telling my father-in-law how he had touched their lives. His best friend and neighbor, a man who is also in his late 90’s, stood up and made a toast. Then he talked about how he wants to die. He said, “I want to die at age 105 of a gunshot wound inflicted by some woman’s jealous husband!”. The room roared with laughter! Then the 40 people in attendance had cake and punch, and sang karioke for a while before it was time to say goodnight. We all had a great time.

What I witnessed was a model that works – for now. On the surface, everything looks fine, in fact, better than fine, but the biggest problem with this model, from a casual glance, is that it is connected to a for-profit corporation. The owner/operator of my father-in-law’s senior living community trades shares of this community on the New York Stock Exchange (NYSE). This corporate owner/operator has to answer to its shareholders. Protecting the common welfare and the principle of the public good are not the primary motivators of this corporation – the profit margin is. As legal scholar, Kent Greenfield of Boston College once noted, “’Corporate social responsibility,’ in the eyes of U.S. Law, is an oxymoron.”

While we were in Florida at my father-in-law’s senior apartment, he pointed how his community has been affected by the recent economic downturn. Vacancies in the complex are approaching an alarming rate. On his floor alone, more than 30% of the units are vacant. Most residents use the proceeds of the sale of their homes to buy into the community. Now that so many houses have lost value, particularly in their part of the country, the pool of potential residents/buyers has dwindled. This can’t continue without there being an impact on the services provided.

Dick’s dad is 95 years old. And even though his 90-plus yr old brother just had a bicycle accident (no lie, Dick’s family is amazing), we have no illusions about my father-in-law living another 20 or 30 years. We suspect that he won’t have to be concerned about the future of the corporation or the shareholders. But my mother is another story. She just turned 74 two weeks ago.

I started this piece telling you about my headache and tirade. Aside from what I’ve already told you about my mom and the adult day care search, another thing that may have set me off was a series of comments made in response to an image posted on the LA Progressive Facebook page.

Here is the image along with a comment. You can read the rest by going to Facebook.

Several of the comments posted below this image reminded me of the vigor the Right invests in protesting against a woman’s right to choose. I thought about how they so ferverently protect zygotes but seem to ignore the needs of fully formed humans, especially those who are aged or ill.

We have all witnessed the screaming matches over “Obamacare” while at the same time you don’t hear a peep about the for-profit medical industrial complex or the Department of Defense with its mega defense contractor corporations that have gobbled up in excess of $1.4 trillion dollars since 9/11 – enough to provide 283.5 million people with health care insurance for a year. (Per data published by the National Priorities Project)

Doing the work we do at the LA Progressive can be exhausting, but it can also be rewarding. Unfortunately, the rewards have not been financial. While I am unsure of how this is going to play out with my mom, I do know that there are a lot of smart people who see what I see — our nation’s economic model is not sustainable.

I’ve been fortunate enough to come into contact with many of these people because of the LA Progressive and I am grateful.

In her acclaimed book, “The Divine Right of Capital”, Marjorie Kelly wrote the following: “At the time of America’s founding, corporations were created by state charter only to serve the public good. As an 1832 treatise on corporate law put it, ‘The design of the corporation is to provide for some good that is useful to the public.'”

Kelly goes on to say, “concern for the public good is the animating force of the democratic order – and it must become the animating force of our emerging democratic economy. We must have a conscious and deliberate concern for the public good built into the system design.”

As a member of the middle class, my tax dollars have helped to pay for the prison industrial complex, the over-bloated defense budget, the bank bailout, tax subsidies to oil companies, corporate welfare and a bunch of other things that Mitt Romney and others avoid paying towards by keeping their money in off shore bank accounts. We seem to find a way to carve out more than a trillion dollars for war but can’t seem to care for our most vulnerable elders.

The Right is fierce and unyielding when it comes to the stance they take on protecting zygotes. I just wish they were as vigorously protective of those zygotes a few years down the road.

Still, I’m left wondering, “What am I to do about mom?”

P.S. If you enjoyed this article please click here to subscribe. We appreciate and need your support. Thank you.

Sharon Kyle
Publisher, LA Progressive

Posted: Thursday, 2 August 2012

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Comments

  1. Red Slider says

    After 15 years of caregiving for my mother (Isobel died in 2002), and my beloved’s similar experiences with her parents I came to realize
    that our society differs little from those cultures in the past that
    threw their elders off a cliff, or expected them to walk off into the
    snow and die after they had passed the age of “usefulness”. In America,
    that point seems to be when one is no longer able to offer themselves
    as fuel to the engines of an economy that had little regard for them at any stage, and none after they could not longer perform that function.

    As the money ran out and the supports were mostly empty sounds people
    made with their mouths I was desperate for some reason to be caring at
    all. I was, as so many home/family caregivers, on the verge of becoming
    a casualty of the disease as well. I once tried to encourage my fellow
    caregivers by reminding them there was “life after caregiving.” But, in
    time, as I saw what the sheer labor of it was doing to me and other caregivers
    (and how much of the so-called “support” was just empty promises) I had
    to modify that statement to, “There’s life after caregiving; if you
    survive it.”

    I managed to survive, but only partially; I also became a casualty of
    the disease. After a decade of lifting Isobel from bed to wheelchair,
    to potty, to bed, to car, out of car, to chair, to bed,… dozens of
    times a day the effort took its toll. i could lift her alright, when I learned how to do it
    properly. What I discovered was that it was the hand-cranking of her bed that
    was doing me in. Try as I did I could not get Medicare to provide an
    automated bed model. The result, at the saving of perhaps a few
    thousand dollars in rental fees for Medicare over the years, was a far higher cost, for them as well as me. Medicare is now paying
    for my serious and permanent back injury which could have been
    avoided with a little foresight and assistance on their part.

    [those interested can read a little more about Isobel's remarkable journey and our neglect of the elderly on my FB page - https://www.facebook.com/note.php?saved&&note_id=424256440954524 ]

  2. says

    My father will be 92 soon. I and my wife are staying with him. In fact I am his only son and I have been with him since my birth. I am a Professor in Banaras Hindu University and with my wife eat in my father’s kitchen. Last year in summer a pace maker was installed in my father’s heart. He is mentally and to a lager extent physically active. He told me yesterday that he would like to be with me till I am 75 years old. I will be 62 next month.

  3. says

    Sharon, thank you for your eloquent article about your mother and the state of health care. As a society, we need to completely rethink our attitude toward housing, so that it’s affordable and accessible to join a housing community, not just for seniors but for anyone.

  4. marie says

    Instead of a low quality, or a way-overpriced retirement place , how about the option of directly hiring (not via an agancy) a qualified CNA or companion to come in daily to look after your mother. About twenty years ago, when I was a little younger, I did that work, looking after ab 80 years old Lady suffering from Dementia.
    Especially now there are so many people looking for a job.

  5. Jules Siegel says

    Great piece — if chilling — Sharon. I’m going to be 77 in October. My mind is sharp. I do have an ailment or two that I won’t go into. This morning I had some basically minor reverses that were more misunderstandings than anything else. My main PC — a dream to work on, but really flaky — refused to turn on. (It finally did a while ago.) None of it was existential, but the frustrations of life took over and I had a complete meltdown (with full free expression of enraged curse and childish rants) from which I am only now recovering. Your story was a big help. It put things in perspective. I fervently pray that your situation improves and resolves itself to the extent possible.

    • says

      Jules — It’s always good to hear from you. I am especially happy to hear that at age 77 you’re still getting pissed off at your PC. It could be so much worse. You could think the PC is a TV and wonder why you can’t find the dial to change the channel. Thank you for your prayers. They are appreciated.

  6. chrissy says

    Thank you for sharing your experience. We went through a similar foray into the adult healthcare system a few years ago, and I was horrified to see what happened. Neglect is rampant, and as a young person you are never prepared to deal with the consequences of our failed healthcare system. :( I wish you and your family all the best in dealing with this challenging situation.

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