Journal: 05/11/06

The motel is still slow. High gas prices are stemming the flow of visitors to the peninsula and it looks like this will be a slow summer for the local tourism industry. This is good news to me—bad to the owners—because it gives me more time to get creative in pursuit of alternate money sources and the holy grail of book writing. I’ve begun ruminating on what direction to take the "book," though its already been written, it is a mess and I think I want refocus it around Joann’s death and this blog. More on that at a later date.

Getting Joann Published

Now that Joann’s obituary is finished and published on the web in this blog, I discussed with Bill whether I should publish it in the paper. His take on it was that Joann lived on the Monterey Peninsula for thirty years and I agreed with this. Publishing Joann’s obituary would be a nice way to let her old acquaintances know that she had passed away. I thought placing it in the newspaper for three days; Friday, Saturday and Sunday would be the best coverage.

Just like the whole mess with getting Joann cremated, this too would also prove to be another fecalith. I called the Monterey Herald’s obituary office to check prices and after sending an email with the obit, they quoted me a price of more than $220.00 to run it on a weekday, and over $360.00 for Sunday. After hearing the quote, I knew that publishing her obit in the paper just wasn’t within reach. I don’t currently have that much in the bank to run it for even one day.

For the moment, Joann’s obituary is enshrined on the web in this blog, and that’s where it will have to stay. Maybe next year I’ll have the money to run it, in a different form, on the anniversary of her death. Or, maybe not.

Journal: 05/12/06

Today is Friday and normally this would be the downslide side of the workweek. This week though I’m working seven days starting with last Monday. I keep getting up and making it here on time every day though. Almost like a point of honor because the last six months before I took time off for home hospice, I was quite unpredictable in when I managed to get to work. In that respect, my life is better than normal.

The VNA Checks In

The VNA gave me a call this morning but I was still sleeping, though they did leave a message. Their bereavement department had called to check in on me and see if there were any problems. This is another of their ongoing services extended to survivors of patients who have completed hospice or home hospice care, as Joann did. The nurses told me about the ongoing bereavement care long before Joann died, but I had forgotten about it. After all, I’m doing all right, aren’t I?

This afternoon I returned the call and talked for some time with Joe, the director of the service. After talking with Joe for a while, I brought up my apprehension that maybe I wasn’t going through all of the grieving steps. He pointed out that everyone deals with death differently and there is no set timetable. I have been wondering when a big breakdown is going to inject itself into my life but hasn’t yet, at least nothing like the week I spent drunk after Joann’s passing.

Talking with Joe gave me a much-needed reality check. I don’t have anyone to talk with who is unconnected to Joann; I haven’t pursued any counseling or group therapy either. I probably would, except for my work schedule and transportation, at least to get those sorely needed reality checks. Joe did suggest that I come to a therapy session or two, but they are in Salinas and during the hours I work. That doesn’t mean I won’t call if something breaks inside of me, its nice to know I have options.

I also put him onto my blog, because I still feel that if you want to know how I’m really doing, read my blog. Joe made the point that my blog, updated regularly, is acting as my emotional release. I’ve witnessed other people grieving inconsolably for a loved one and it strikes me that they have themselves all bottled up, getting ready to explode. At least I get it all out in my blog and that was the intent Joann and I set it up for, as a way to keep moving on after she died. Joe said he would call me with a comment when he read the blog.

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.

Journal: 05/09/06

Now that I have Joann’s obituary out of the way, I feel a little better. Maybe there was a tiny bit of closure there, some sense that I’ve placed a marker by the roadside and now must continue on alone. I don’t feel any more alone today than I did last week, but it’s definitely time to start mulling over taking back my life. I don’t have any thoughts on how I’m going to do it, but I do have reasons why.

Moving Forward, But Not Moving On

It’s time, I think, to start cogitating about what and where do I go next in my life. I don’t mean leaving the Monterey Peninsula, or dumping my job. I love Monterey and shoving the job would be suicidal in this locale and economy. What I’m talking about is the form of what I do next with my life.

Certainly, my life has been radically altered by the loss of Joann, and though I don’t foresee "moving on" in the future, I do at least have to do something with my life aside from sitting around in an intellectual and spiritual coma. What I need to do is "move forward" with the plans I had made during Joann’s time and not do myself an injustice by believing that without Joann in my life, I can’t be productive again.

For several years before Joann came into my life, I was making the transition from programming computers to writing books. Although I moved here originally because I wanted to write books in John Steinbeck’s countryside twelve years ago, this separation from the past started in earnest when I had my back surgeries. It was during the time of Joann that I finally summoned up the gumption, with Joann’s enthusiastic support, to finally admit that I needed to completely break off the computer development fixation that by this time was only an occasional web development project.

Now I’m alone again and adrift in my sea of dreams. If I’m ever going to get moving again, I have to take off the cruise control and put my writing and myself out to the public. With Joann in my life, I was secure, and therefore unmotivated, to really publish anything. Sure, money was tight, but I managed to keep everyone (Joann, Bill and I) in apartments or rooms. But that period has ended and if I want to survive, I need to advertise my substantial writing and editing skills, attract a publisher and finish a book, not necessarily in that order. The first thing I have to do though is to get interested again in becoming who I think I am.

I remember a time back in 2000 when I was managing a small motel with nineteen rooms all by myself. I had had my third back surgery a year earlier and was using the time to recuperate from the resulting case of bone disease that the surgery left me with. After a year of spending all of my time taking an array of medications and painkillers, all supported with a generous monthly disability payment, I dimly realized that I was actually getting stupid. Over time, I became frustrated with my semi-invalid ways and longed to change the manner that I was living. I needed to regain control of my life instead of living in a drug-induced stupor. I reasoned that the only way I was going to change this was to attack the root cause and forfeit my disability check. The thinking was that so long as I was safe, comfortable and unmotivated, I would never change. There was always going to be pain in my back, I philosophized, I would simply have to learn to deal with it. I took myself off all my medications over a two-month period and gave up my monthly check, and have never looked back.

I need to do the same thing now.

Journal: 05/08/06

Back to work today. Now that Joann’s back home and the maudlin days are over, I thought I would take a crack at writing her obituary. For some reason, I felt compelled to wait until her ashes returned, maybe because without them, her loss wasn’t quite real. I don’t know all of the reasons for the wait; needing to get some distance may be another factor also. Things look stable enough in my life now that writing her obituary won’t trigger some sort of melancholic tailspin downward.

Joann’s Obituary

Joann Gottlund-Scott August 24, 1951—April 6, 2006 MONTEREY, CA.—Joann Gottlund-Scott, 54, passed away peacefully in her sleep at her home in Monterey with her loving husband by her side on April 6, 2006, from complications of end-stage chronic obstructive pulmonary disease (COPD) and coronary artery disease. Joann was born on August 24, 1951 in Texas; she spent her childhood and teen years in Modesto, Ca. and was a thirty-year resident of the Monterey Peninsula. She divided much of her professional career as a Registered Nurse working at the Community Hospital of the Monterey Peninsula (CHOMP) and the Visiting Nurses Association (VNA) of the Monterey Peninsula. She was well respected in her field by employers, colleagues and patients. Joann had a great love of life and a boundless passion for living it, even through the final three years of her life as her disease advanced. She was always there to lend a hand to friends in need, especially when they were ill or having surgery. Joann was a wonderful wife, loving mother to her son David, and stayed in daily contact with her mother, Mildred, the entire year before she passed away. Joann will be missed by everyone who knew her. Joann was preceded in death by her father, Joe Dubuc, and her mother, Mildred Mahan. Her husband of eighteen months residing in Monterey, Ca., James A. Scott, her son residing in Sacramento, Ca. David R. Shorey, her brother Bobby and sister Janie residing in the Modesto, Ca. area, survive her.

Journal: 05/07/06

Today (Sunday) turned out to be my day off, the resident managers wanted to visit relatives on my normal day off, and that was fine with me. It worked out well for shopping also. I planned to have Rose take me to Costco® for my monthly shopping trip today anyway. Because I didn’t have to work Sunday, I didn’t have to make a quick trip in the morning, and then get ready for nine hours behind the front desk. I made the quick trip at 10:00 AM with Rose, and spent the rest of the day drinking beer and watching television, my usual day-off activities. Bill made pan-fried pork chops for dinner and we played cards. I was in bed by midnight. The perfect end to a great day.

Joann’s Passing: One Month Later (Part 2)

I didn’t know there was going to be a Part 2 yesterday, but the more I thought about it, there were more things I needed to bring up. Settling in as a single person—albeit a widower—changes the way you think about things around you. Every action is different. Having spent three years always adding another person into daily life considerations, it’s the little things that catch you up.

When I go shopping these days, I am surprised at the way Bill and I have adapted to one less person to shop for. There are no Milky Way® bars to budget for, no fat-free milk to worry about, and the tin of coffee lasts a lot longer. Only two people are eating in this family now, so we package the bulk foods for two, instead of three. Bill and I buy the same amount, it lasts longer though and the cost is less. It’s an adjustment because when I realize the difference, I know Joann is gone.

Joann’s urn coming home didn’t trigger any major emotional reaction. In fact, it validated my efforts to do the right thing by her. I no longer wonder if I couldn’t have done something more for her as I did in the first days after her death. I simply accepted her urn as validation that I did the right things for her. The VNA nurses knew that she was comfortable and out of pain at the end, and I believe so too. I gave her the goal she wanted, to die at home, in the special place where she felt loved and cared for.

There are some people who are so completely destroyed by a death that they become immobile. That doesn’t seem to have happened to me. After all, I have promises to keep. Maybe it’s those things she asked for at the end of her life that has kept me going, focused on my responsibilities. I have not become stuck in the event, I am moving forward, albeit slowly.

I’m still smoking, with no end in sight. Cigarettes Are Cheaper®, rather than the nicotine lozenges, currently fit my budget better. I still look forward to being cigarette—if not nicotine—free, but it’s going to take awhile due to the cash flow. Meanwhile, I try to minimize the impact of smoking by using "light" cigarettes and the standard "kings," that are shorter than the 100’s I used to smoke. When the money improves, I’ll be able to go back on the nicotine lozenges.

I’m still doing only one accomplishment a day. Usually, that’s getting to work on time, and I try to do one work-related accomplishment on top of my normal duties. As time passes, I will be able to do more, but I realize that I’m still "coasting." Day-to-day, life is a routine, but at least it’s a routine I can handle with the minimum of grieving, and the maximum involvement in the real world that (at the moment) I can handle.

I have retained my ability to function as a person. Certainly, I have flashbacks to when I took care of Joann, and I miss her tremendously. There is a huge empty place in myself that I don’t know how to fill, and for the moment, I’m not sure that I want to. Joann, in her last weeks, told me that one of the reasons she didn’t want too much medication was that if she didn’t feel her pain, she didn’t know she was alive. Somehow, I don’t want to stop feeling the pain either, because then I will not be sure if I am alive.

Journal: 05/06/06

Another normal day, though I took notice that it has been a month since Joann’s passing. Bill brought home a lemon meringue pie today as part of our celebration of having been at the motel for three years. Lemon meringue was always a favorite of Joann, Bill and I. In taking note of the one-month since Joann’s passing, I decided to look back at that month and take a status check.

Joann’s Passing: One Month Later

It is one calendar month since Joann’s passing and its time to take stock of how I’m doing.

I haven’t had any major breakdowns other than the week after Joann died when I stayed drunk most of the time. In fact, I’ve regained control of my life to much the same degree that I had before. There have been no major depressions, no continuing frustration over my loss, just a low-level, constant grieving and sense of loneliness. I’ve been able to restore most of my life-markers and touchstones, which I hang onto every day. This blog too has helped keep me sane and focused, acting much like a constant companion I can spill out my thoughts to, anytime, anywhere. The grieving process for me has been low-key so far.

I get up and go to work every day without fail. Work had been my safe harbor, a way to keep myself busy and focused on my life. When I’m at work, aside from telling some long-term, repeat guests who ask about Joann, I am able to keep from dwelling on her passing. I suppose my job acts as a distraction from the reality of Joann’s being gone, I sleep much of the time I’m at home, so there is very little time to have the opportunity to dwell.

Bill is in "hover" mode, probably because he was used to always having Joann available and spends the bulk of his time alone now. Without Bill though, I don’t think I could have come through this with so little damage. The time I spend with him each night, between the times I get home and bedtime, has acted as yet another distraction from the realities of Joann’s death, it has been a supportive distraction as well.

The new thing I am having to get used to is Joann’s ashes being home, and the obligation I have to her about her final disposition. I’m okay with her wish to for us to be spread together, and having her ashes is not a problem. I’m still talking to her urn occasionally, but I guess that’s natural. Nevertheless, I’m glad to have her home.

I will work out the money situation one way or another. As far as I can tell, the future looks bright even if there are potholes in the road. I promised Joann that not only would I look after Bill, but myself as well, and I will stick to that. I’ve been mulling over what it is that I want to do with "the book" and am beginning to formulate some ideas. I hope that once I get a plan going, I’ll start work on the book soon.

My status check is okay. Better than expected, even by my standards.

Journal: 05-05-06

I moved Joann to a new spot today, a more appropriate place than the bathroom. I put her urn on her bedside table and shielded it with her three favorite stuffed animals that I kept. You can still see the urn; it’s just not as dominating as it would be otherwise. Anyway, I figure that if you’re a ghost, you don’t care if there is anything blocking your view from your urn. Bill noticed it gone from the bathroom and searched quite a while before he discovered the small memorial location I set up, so he proved that Joann’s new placement is not an intrusion into the home-space.

The Search for New Money

One of the reasons Joann, Bill and I could make Snug Harbor work both as a physical place and as a family unit was because each of us had a specific and well-defined role. I did all of the outside work to pay the rent, which ultimately came to mean that I exchanged all of my work for the motel to maintain the rent of the apartment after I quit working for other motels. Even when I worked for other motels, all of my income went into the rent anyway, so this was more a change for convenience than monetary gains. Joann brought in her Social Security check, which with a couple of hundred dollars a month from Bill kept us fed and paid the bills. Bill’s job was to keep his car on the road and provide transportation to and from work for me and to doctor and hospital appointments for Joann. Bill was also responsible for carting Joann and I shopping several times a week.

With the loss of Joann, so also is the loss of her check, until I can arrange for survivor’s benefits from Social Security. I got lucky this month; Social Security direct deposited her check anyway, even though the mortuary notified them that Joann was no longer with us. Eventually I’ll have to pay it back, but by that time, I should have an alternate cash source in place. Therein lies my problem.

So far, Bill has managed to keep our table well supplied, but that’s all he can do. I have to pay all the bills, buy cigarettes, beer and whatever household items we need. However, I work fifty-four hours a week at the front desk. That leaves no time for me to pick up a second job, and even if I could, there is the issue of sleep. I take only one day off, so that isn’t a work-window either. The only thing I can think of is to get something I can do over the web or maybe for a few hours in the morning before I go to work at the motel. If an early morning gig requires me to travel more than a couple of blocks though, that isn’t a workable plan either as I’m bus-bound until Bill gets his car out of the shop. Even then, a few morning hours won’t make up what Joann brought in every month and I’ll be increasingly exhausted.

I don’t know what the answer is yet, but I know that I’ll have to find one, and soon. When Joann’s check does stop arriving in the bank, I will still owe $550.00 for the direct deposit advance I take each month. Defaulting on that could close my account down, something I would find impossible to live with. Rose doesn’t have any money and she has her own problems, so that isn’t an alternative either. I have no one else to borrow from, so it is all left on me.

I plan to apply for survivor’s benefits as soon as possible, although that requires a bus trip to Salinas and back, a time-consuming trip that will eat up my day off, as it is too long a trip to make in the morning before work. Other than that, I’ve been scanning the web for online opportunities and trying to think about how I can promote myself in that manner. Maybe I can think up something to put on Ebay. Maybe I can start selling Bill’s art online, anything that will bring in a relatively steady cash stream. Anybody need a ghostwriter or an editor?