Journal: 05/10/06

I started out by writing "Everything is normal; I don’t have a lot to say about my day," but I guess that isn’t completely truthful. I had a phone call today, yet another query about Joann, and I had to tell them that she had left the building. However, in this case, it was different…

Home Hospice is an Unsupported Venture

Today, In-Home Supplemental Services (IHSS), a California state program that arranges to pay family members who provide services to other family members who are terminally ill or disabled, finally called seven weeks after the VNA put Joann in for the program. I asked the lady who called if I qualified for anything because, after all, I took five weeks off from work to take care of Joann and thought I deserved a little compensation for putting my job and income on hold for that time. She said "No."

I had worried that because Joann died three weeks after the VNA put her in for the program, that the agency would simply pass the whole thing off, and that is what they did. Its not that I didn’t gladly give my time to Joann, but there were many financial hardships in doing so. At the time, I could have used a little financial help, it would even have made Joann’s cremation saga less urgent and stressful.

The VNA told me that it would be two or three weeks before IHSS contacted me and at the time the wait seemed less urgent than it became. At the end of the month, I wrote a letter to the editor of the local newspaper, the "Monterey Herald," expressing my frustration that agencies or non-profits that were supposed to offer support in these situations did not. Joann and I were almost thrown out of our apartment because I couldn’t pay rent during that time. Luckily, the owners finally realized what was going on and backed off. This afternoon the call from IHSS just brought the whole thing back to me.

I’m still not happy with the lack of support during that time and am now looking forward to some rough times financially. I will figure out a way to get through those times, but it is all so unnecessary when some agency should have done their job in the first place.

Below is my letter-to-the-editor. It was never published because I went over the 200-word limit. I didn’t expect to see it published, but it let me vent.

Subj: Red Tape, Dying and Those Who Caregive. Dear Editor; There are many issues affecting those of us who live on the Monterey Peninsula and in Monterey County. Taxes, crime, housing, big-box stores, Natividad Hospital, are just a few. At the most personal level, concerns revolve around job, family, daily living, and yes, dying. Many people have jobs that provide for a terminal illness or death in the family, and time—in the form of paid leave or paid vacation—that may be used to be with a loved one at these moments. However, it is the nature of our economy in Monterey County that a large portion of us with a dying spouse, sibling, or parent remains at the mercy of our employer if there is extensive care-giving required by a family member. It serves no purpose for a terminally ill, homebound person to have their household threatened by the loss of a caregiver’s livelihood. Many cultures simply pass around their sick and dying to other members of their extended family. The Visiting Nurses Association of Monterey (VNA) manages a "Home Hospice" program that both frees up facilities and keeps family members together during the final stages of an illness. Yet, there is a fissure in the support network My wife is in the final stages of emphysema COPD. She arrived home February 14, 2006 under VNA-supported home hospice. Since then, she has deteriorated to the point that I have to take care of her 24/7. Care-giving her doesn’t bother me, in fact I love it that she wants to die at home where she is adored, and not amongst strangers. Unfortunately, we are about to lose our home over this. My job in the hospitality industry was "at-will" in exchange for housing only. It wasn’t much of a job but it did keep a roof over our heads. The VNA applied for us to enter the In-Home Supplemental Services (IHSS) program, which is a major step for toward payment to take care of my wife at home, which would go directly to rent. I have a letter from the VNA acknowledging all of this, but I do not have anything from IHSS stating that this is in the pipeline. As a result, non-profit agencies will not help me bridge the rent gap because I’m still living in the same place, and running up a ferocious past-due rent bill. Meanwhile, the owners are getting restless. My reason for writing this letter is twofold. First, so that someone at IHSS might read this and help cut some red tape. Secondly, in the hope that nonprofits may chance upon this piece and realize that, not every case is the same, and not everyone has the financial wherewithal to bridge the gap between illness and politics. James Aaronn Scott Monterey, California.