Thursday, March 17, 2005

Why I Moved to Israel - Part One: All About my Mother

In thinking yet again about why/how I moved to Israel, I realized I had to reach back before the decision to find where the seeds were planted. Then I came across this blog and it mobilized me (along with polite reminders from Noorster, The Lioness, and Smartmom) that some of you out there are really waiting...and very patient you are). This is a long story, so settle in with your favorite beverage.

I've described my mother's background here. She became a widow at 64, and although my dad's death was a shock (he died of a massive heart attack, his first, while taking an afternoon nap), she weathered the blow well, lived independently, and stayed healthy until her late 70's. In 1977 she began to feel fatigued and I noticed when I visited that her house was kind of dark. When she went to the doctor, he diagnosed anemia and prescribed iron. It helped, but not much.

When she returned to her doctor for follow-up she was still weak, and he sent her to the local hospital in Queens for tests. They gave her a blood transfusion, and she felt a bit better, but they didn't have a definitive diagnosis, so she was transferred to Mt. Sinai Hospital in New York City. Most of her long-time neighbors had moved to Florida by then, so she had very few visitors. One fairly new neighbor, an Orthodox Jew, came to see her. His visit was extremely comforting to both of us. At the time, my brother Googleman and his family were traveling in China, and my older brother Sailorman was living in California, so I got to be the main decision-maker. I was 40, a divorced "head of household" in New Jersey, and my kids were 11 and 9 years old.

It didn't take the folks at Mt. Sinai long to discover a malignant lump under her arm. She was 80 years old.

They didn't tell her she had cancer; they told her she had a "growth." I got more information in private from the doctor, because I asked blunt questions: Is it cancer? Yes. What's the prognosis? Cancer in old people grows slowly. How long has she got? They hedged, hemmed, and hawed. I figured from all the hemming and hawing that aggressive measures were not likely to give any good results. The cancer had metasticized. They couldn't determine the origin. Wow.

During this period I felt alternately either angry for not getting more direct answers or grateful for the time and space to figure things out for myself. Googleman and his family returned from their trip, so we met to discuss the situation.

After a week or two we were supposed to meet the hospital social worker to agree on a Discharge Plan. Googleman made the three-hour journey from his home to Mt. Sinai, and I made a one-hour journey. The social worker didn't show, having cancelled at the last minute. Not good. Googleman and I had our own Discharge Plan meeting. Mom was feeling well enough to go home, with a practical nurse in attendance, and start some chemotherapy. But, given a prognosis of a very slow decline, she would have to adjust to giving up independent living at home. Both Googleman and I wanted her to come live in our homes, knowing that meant being responsible for managing her care until the end. It was a serious time.

I had many reasons for wanting my Mom to spend her last years with me, but the most pressing one was to save her from the "heroic" treatments which were standard for cancer patients back then. I was certain they would cause her needless suffering and no cure. Mom had made it clear to us over the years she would never want that. Googleman's father-in-law had died a most agonizing death 15 years earlier, from prostate cancer, during which every conceivable procedure had been done to keep him alive, and Googleman's mother-in-law had spent every day of his last months at his side in the hospital, watching him suffer more and more. In the end, soon after he died, she committed suicide. They were both in their 60's at the time.

From that experience, we were alerted to new and different way of treating terminal illnesses: palliative care or hospice. Luckily, soon after my mom went home from Mt. Sinai, Dr. Cicely Saunders herself gave a talk at NY Hospital about her work in London at St. Christopher Hospice, the first modern hospice, and showed a documentary film. Although it was a new concept, and at the time of Dr. Saunders' talk there was only one hospice in the USA, in Connecticut, it was exactly what I wanted for my mom and I had a hunch (actually more of a hope, a need, and a prayer) there would be more hospices available in the area where I lived by the time we needed it.

It could not have been easy for my mom to come to terms with having to leave her home of 37 years, but at least she had some consolation: both her married children wanted her. Sailorman is a bachelor, and although he had recently retired and was therefore free to care for her, he was also the least equipped and experienced in caring for others. Plus he lived in California, which would really uproot her and make it impossible for her remaining friends to visit. Googleman lived on the East Coast, and we had two children each. His were already in college, and Mom decided to move in with me because she felt she would be more useful to me, the single working mother with younger children at home. I liked her positive attitude, although I knew her usefulness would become more and more limited as her health declined.

There were plenty more logistics to deal with: my priorities were to find a hospice, a hospice-friendly oncologist, and to remodel parts of my house to accommodate my mom. Even though all they could offer was dreadful treatment to prolong agony, many doctors then were not willing to giving up control of cancer patients to palliative care. Pain management was an infant specialty.

My next-door neighbor in New Jersey was a nurse at a nearby hospital, and she told me her hospital was going to start a pilot home hospice program the following year. Perfect! I felt God was on my side (the nurse's husband was an Episcopalian minister). I called the hospice program director to get the name of the most cooperative oncologist they would be working with. Either because of bureaucracy or professional ethics she couldn't recommend one doctor, but she could give me three names, so I would have to choose. I asked a lot of questions about each one until I could suss out which one she really liked the best. Lucky for me she felt as stifled by the restriction as I did, so I got the information I wanted.

My house had a hybrid design: split-level on one side, classic two-storey plus attic on the other. The children occupied the two lower bedrooms. The larger downstairs bedroom made more sense for my mom. I got independent contractor/carpenter to finish the attic so one of the kids could move up there. My daughter got first choice on the "attic suite," because she is the oldest and had the smallest bedroom, but she rejected it. She didn't like the idea of tramping through my bedroom to use the bathroom. Her brother, on the other hand, was thrilled: he loved the idea of moving to the highest room in the house.

While the attic refinishing was going on, I took wallpaper samples, carpet samples, and paint color samples to my mom. Being ill was taking away so much of mom's autonomy that any choices she could make became increasingly valuable. Her decorating choices created a room in my house that looked astonishingly like a room from her own house: beige carpeting, celery-colored walls, striped floral wallpaper. It took Mom several months to sell her house and choose what to bring with her. Googleman came up to help her on weekends.

Conventional wisdom has it that you paint a room first, then wallpaper, then carpet. Makes sense. The attic had to be finished before my son could vacate his bedroom for painting the week before mom was moving in. But the painter didn't show up on his appointed day, and the paperhanger was booked, so the carpet went in first, then the paperhanger did his thing, and the last-minute replacement painter was still putting a second coat on the windowsills when the moving van arrived! Googleman had been helping Mom at her house, and called when they were ready to leave, on schedule: I said, "Go very slowly, get lost even!" But they didn't. And there were no breakdowns on the GW Bridge that day, for a change. Never mind. We were now a three-generation household.

6 comments:

Third Street said...

Another epic. Great. I'm going to have to save this for later. Looking forward to you aliyah story.

The Lioness said...

I'm loving this, where's the rest!

Dale said...

(o)

Third Street said...

Finally got to read this. Interesting brief history of hospice car and cancer treatment. How its changed. I think it was great that you let your mother decorate her room. This piece made me think about my own responsibility as a daughter. I'm about to read part 2.

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Anonymous said...

I LOVE your writing. I also came to Israel in 1988, but left last summer to help my parents in Texas avoid a nursing home. It is the right thing to do, but sometimes boring so Thank G-d I have wireless in the house and can read wonderful writing.

Your blog reminds me of why I went in the first place, "Yitzhok" means "Laugh."