This book about my experience of the American 'safety net' is just that: about my experience.
It is not an analysis weighing the pros and cons of our social services networks. Nor is it a manual on how to get social services if you are ever in need of them. (Though it might be very helpful to someone in that situation.)
What I know I can offer is a first-hand account of what it like to have to rely largely on strangers and social services for your survival and sustenance 'through no fault of one's own. [One of the specifications for being considered 'homeless' by H.U.D. (Department of U.S .Housing and Urban Development) and eligible for housing assistance.]
I will describe how I got into this situation thoroughly and candidly. I will also be forthright about the emotional, psychological and physical toll it took on me. And I'll also document what I have done and continue to do in order to mend some of that damage, as well as describe some of the adjustments I have had to make in order to accommodate the ones I cannot fix.
For in order for this to be a true 'odyssey', there must be formidable personal challenges to overcome and a banner of surrender or victory to brandish at the end.
Let’s see which it is.
In December of 2009, I drove to a church in the town where I live, in southern New Jersey. Earlier in the week, I’d seen an ad in a local newspaper that read, ‘Contemporary Community Church.’ Lately I’d been spending way too much time alone, and this sounded like a place where it could be safe for me to be amongst people again.
On my first tentative pass at trying to find the church I drove to a street of the same name as the one listed for the church and found only an old Riverboat transformed into a restaurant and a few seaport trinket shops, all of which were un-open on an early Sunday morning. The street was also empty of any pedestrians who might have been able to give me directions.
I initially took this – with some degree of relief – as a ‘tea-leaf’ sign that I should not go to this church in order to assuage my increasing, nearly desperate, sense of isolation and loneliness.
You see, four months earlier my mother had passed away after living with Alzheimer’s for more than two years. During that time, I had been her primary caregiver. For the last six months of her life, she’d become non-ambulatory and incontinent. Home aids and hospice workers assisted me with her for an average of five hours on weekdays and four hours on weekends. For the remainder of my time during the day I was virtually a shut in, alone with my deteriorating mother nineteen to twenty hours a day, seven days a week. When my mother passed away the home aids and hospice workers, my only support network, literally disappeared, leaving me by myself to deal with my emotional and physical exhaustion, loss and grief. Additionally, unbeknownst to me at the time, I was also in the throes of experiencing an acute traumatic stress disorder. The disorder was the result of caring for my critically ill mother largely on my own while also engaging in a fiercely contentious relationship with a sibling that started with our mother’s diagnoses with Alzheimer’s and didn’t end until her death. (I document that experience in An Almost Unbearable Heartache
When I returned home from my unsuccessful mission to find the church, I felt a way that I can barely remember now. The best I can describe it, from recollection, is a full body and mind sensory experience of being pulled down and drawn into an overwhelming fear of what might come next. (The executor of my mother’s estate, including her house, was the sibling I mentioned whom I had a contentious relationship with. She obtained a court order evicting me from my home just after the beginning of the New Year, less than a month away.) While I was in this dreadful state, getting out of a chair in order to answer a phone or walk to a bathroom was a task. It was as though there was a conspiracy of invisible forces whose aim was to pin me in the chair where I was sitting and let me stew there in my thoughts doing nothing, forever.
It is as torturous a sensation to experience as I can only imagine being buried alive would be. More than a few times during this period I wondered – realistically, not morbidly -- if the end of this experience would be me joining my mother?
After a few months alone dealing with feelings like this, I was determined to change how I was living, but only at the very beginning stages of being able to do so. Trying to find the church, even though it turned out to be a futile attempt, was nevertheless the beginning of something new. Giving myself some credit, and a little break, allowed my attention to drift out of my mind and see the newspaper with the ad for the church on the floor next to my chair. There was a phone number and I quickly dialed it before I could talk myself out of it. I left a simple recorded message asking for directions.
I wasn’t looking for a ‘church’, so it wouldn’t have been a disappointment if they didn’t call back. It was the words ‘contemporary and ‘community’ that drew me in. Though the important thing, for me, was that I had tried to do something that would get me out of the grip of whatever it was that I was in the grip of and out amongst people again.
Sometime during the following week, someone did return my call. The voice was that of a youngish-sounding woman who explained to me that the street the church is located on was divided in two by an avenue. If I would have returned to the avenue and drove half a block south, I would have found the other half of the street and the church. She didn’t say anything to promote the church, nor did she ask me any questions. She told me her name and to ask for her if I showed up on Sunday.
To say that her genuineness made it easier for me to get there the next Sunday would be a lie, but at least it did nothing to augment my chronic wavering and feelings of despair. I’ve tried a couple of times already to describe what it is like when one is under the spell of despair or dealing with the after-effects of acute stress. Here’s another: two and two no longer add up to four. When you are faced with a simple proposition, such as if you are spending too much time alone then you should get out and meet people, it simply doesn’t add up or compute. You will either get stuck around three, or flare out exponentially with too many zeros to count (4,000,000,000,000…).
Although I literally went through a gadzillion reasons why not to go to church, or anywhere, the following Sunday, somehow I made it. It was a week or two before Christmas – a day that I was dreading and intentionally avoiding being aware of. It turned out that it was this Sunday that the church was holding its Christmas celebration. Young restive children, under the guidance of earnest adults, reenacted, yet again, the nativity scene.
It could not have been homier than if Norman Rockwell had painted it. Or more different in that respect from the dark life of the mind I was engaged in. Without my consent, or intention, I confronted my biggest fear of the moment – Christmas, and all its emotions, memories and nostalgia it inevitably brings up. I managed to laugh with the children, smile at the adults, sing along with familiar carols, and not feel so alienated. A start.
Unless you have been in the throes of despair, or have suffered a deep emotional bruise, than I don’t think you can fully appreciate how significant little things like this can be. Or perhaps you can. Either way, it’s how I ended up ‘going to church’, which, as you’ll see, plays a vitally important role in me withstanding the ominous circumstances I would soon be facing. The little community church will also in time inspire me, for counterintuitive reasons, to write this book about my odyssey in the great American safety net.
“There is a divinity that shapes our ends, roughhew them as we will.”
(William Shakespeare, Hamlet. Act I: Scene II.)
Chapter 1: Some Background
Throughout the experience of taking care of my mother who was terminally ill, which I already noted that I describe in detail in An Almost Unbearable Heartache, a sibling continually tried to undermine my efforts and ability to care for my mother.
My sister, who was the only living member of my immediate family (my brother and father were deceased) carried out this mode of operation because she felt and thought that our mother should be living in an environment she had more control over, either with her and her husband or, more likely, in a nursing home. I amend that; she didn’t think and feel it, she was convinced of it. Therefore, in her mind, she felt justified in doing anything to get what she wanted, and hurt anyone whom she perceived as being in her way She maintained this position despite the fact that our mother repeatedly stated her desire to remain in her home -- to me, as well as my sister, and later, to a court-appointed lawyer and guardian. My sister would nevertheless maintain a willful and determined campaign to either force our mother out of her home, or make it so difficult for me that I’d give up taking care of her alone.
Why? I’m not a mind reader and can’t say for sure, though I think an elder sibling’s (6 years) general sense of entitlement played a role in it as well as a specific sense of greed and possessiveness that made her feel as though she was entitled to be in charge of our mother’s life, home and possessions. Another factor, that can neither be underestimated nor identified specifically, is the cumulated effect of all the shared childhood experiences that in adult siblings more often than not bring about emotionally skewed and irrational interactions raised from the subconscious. My sister and I could be poster children for such.
Her actions to undermine my efforts to care for our mother started with calling Adult Protective Services (APS) and making false charges against me, bringing into question my capabilities and motives for caring for our mother. The caseworker would not confirm or deny that my sister had called them, though she offered, as way of an apology, I felt, that a majority of the calls they received were from other family members and were in fact merit-less. They were obligated to investigate every complaint they received. The case was closed after two compulsory visits. My sister then – acting as my mother’s power-of-attorney -- filed a lawsuit on behalf of my mother charging me basically with the same complaints she made to APS., plus, for the sake of litigation, the formal charge of ‘using my mother’s illness for personal gain.’
I had to hear scurrilous charges leveled against me in a courtroom full of other litigants waiting for their cases to be heard. Not only that, but I was being accused of these very personal charges by someone I’d never met before, my sister’s lawyer. They had not interviewed me nor had they come to our house to see for themselves what was going on. Their entire case was based solely on what my sister told them. Though feeling deeply humiliated, angry and somewhat intimidated, I nevertheless ‘defended myself against a negative’ (in propria persona) well enough to have the judge halt the hearing and order a court-appointed guardian and lawyer to review the case and mediate a resolution.
In the end, the court revoked my sister’s power of attorney and made me the guardian of our mother’s person. They also made my sister the guardian of the property and then ordered her to take out a reverse mortgage to provide funds for the in-home care of our mother, including a monthly stipend for me.
The court-appointed guardian strongly advised me to accept the resolution as is, which she said was favorable to me. (Why wouldn’t it be? Did they expect me to be grateful to the judicial system for allowing my sister’s lawyers to drag me into court and humiliate me publicly for no credible reason?)
There were three provisions in the final resolution – drawn up mostly by my sister’s lawyers with minor input from the court-appointed surrogates -- -- that I felt I could not live with or accept. One, that I leave the premises within two months of our mother either dying or moving from her home; two, that my stipend be cut off immediately following our mother no longer living in her home; and lastly, that my sister would be given final medical authority over our mother.
I felt it was reasonable for me to request adequate time to recuperate following my mother’s death, and to have the stipend continued for another month or two so that I would have money to live on and be able to pay for another place to live. The final medical authority to me was absurd. My sister was still in denial that there was anything seriously wrong with our mother despite the court declaring her incompetent to handle her own affairs any longer due to dementia. We wouldn’t have even been in court if our mother could still take care of herself.
I received half-hearted, at best, support for my objections from the court- appointed lawyer and guardian. My sister’s lawyers maintained their position that I either accept the resolution in its entirety or ask for a hearing before the judge. The court-appointed guardian cautioned me that I could risk ‘losing everything’ if I asked for a hearing.
But their ‘mediated resolution’ seemed to be just that: a compromised agreement made between lawyers that made them look like good mediators, but which gave little regard to how their rulings might affect me in the future. So, I went forward with my request for a hearing before the judge.
We marched back into the courtroom, took our places, and my sister’s lawyer then spoke first and announced to the judge that if I refused to sign the resolution, they would make a motion to have our mother taken out of either of our care and placed in a nursing home or other institution for the ill and ageing.
I was shocked, and wasn’t even going to take it seriously until the judge asked my sister’s lawyer if they had specific places to recommend. When they responded that they did, I spoke up and said that I would accept the resolution as is.
The whole purpose for me taking care of our mother at home was so that she could avoid the experience of going into a nursing home. It was her greatest fear and something I had promised her I would never let happen. I couldn’t compromise on that, so I reluctantly agreed to sign the resolution.
I learned later from a legal aid representative that the motion my sister’s lawyers presented was a bluff often used by lawyers in such situations. They thought it ‘very unlikely’ that the court would remove someone from their home, and especially if they were being taken care of by someone in their family.
But I wasn’t a lawyer so how was I supposed to know that? And I don’t know if I would have been willing to take a chance on our mother’s future with only a ‘very likely’ to go on.
My purpose in rehashing this story briefly is to show how and why I came to the point where I was literally made homeless and destitute ‘through no fault of my own’ and then had to rely entirely on the kindness of strangers and the state for my survival.
I’m also describing the actions I was taking at this time in a rational manner for the sake of maintaining a readable narrative of my experience. But in real time, I was moving as though trapped in gauze. Everything seemed to be going in slow motion. On more than one occasion, I literally pinched myself, half-expecting to wake up from a bad dream. But, as we will see, it wasn’t a dream.