Fourth Monday Susan Speaks: Pammie Story #5

No, really, this was The End

By Susan C. Price

[Sequel to “The End,” published on December 23]

This is about the end of Pam and how I handled things, or didn't. The two-year process of her decline and her estate...It tells you about how I felt and what I thought. I wrote it because I needed to get the rest of her story out (somewhat) of my head so that I could maybe evaluate how I had behaved. Also, the story might contain useful information for dealing with this sort of situation. It might just be sad or ugly to you. You have been warned.

My memory at first said that the first inkling of change in Pam arrived on a Saturday in early 2009. I got off the phone from my weekly chat with Pam and realized that when I told her a story about my granddaughter, Pam had given a response of, "Awww, how sweet," instead of her usual snarky comment, like "Ewww...rug rats, glad it's you, and NOT me !"
    Pam had been nice! I thought.
    Something must be changing with Pam…She's NICE?
    This was the first time I noticed that something really was different with Pam. Then I realized that she had been being nice on the phone for a few weeks…or more. All the moving from house to house, across the country and back. All the anger. All the weird little jobs, and the loss of each. All the changes. But this, being nice, was the first time I registered that there had been change in Pam's behavior.
    But, that was NOT the first change. My memory had conveniently "misplaced" the following earlier changes I had failed to notice.

In early Fall 2008, as part of my 60th birthday celebrations, I invited Pam to a lunch I was hosting in the Napa Valley in late October. Over several calls she talked about joining us, as she loved the Napa Valley, but finally concluded that she would have to drive because she didn’t want to board her cat, and it would take her more than one day to get there, and there were no cat-friendly hotels that met her criteria...so she politely declined. Then I suggested she fly down just one night in October for the other celebration in Los Angeles. She was all set to do that, and made the air and hotel reservations. On the afternoon of that party, flush with other out-of-town guests and busy, we had the following phone conversations...she spoke with great slowness (I remembered...later):

• "The limo brought me to the airport...but the board says...'flight delayed'..."
• "Ok," I replied, "keep me posted."

A half-hour later, she called again:

• "Now it says...it's an hour late..." "Ok, talk to you later."

An hour goes by.

• "The flight has been cancelled...What should I do?"
• "Pammie, honey, just call the limo and get it to take you back home."

She called from home later, greatly relieved to be back in her house. When I play back the tone and the pacing of her calls...I cannot figure out how I failed to notice she was not herself.

When Pam's Christmas gift arrived in early December 2008, I noticed on the accompanying note that her distinctive stylish printing was all wobbly and shaky. I phoned her immediately, "What's up with your handwriting?" "Oh, it was late in the day and I had been drinking," she replied.
    Years before I had noticed during our weekly Saturday morning phone calls that Pam was consistently drinking something. I asked what she was drinking, assuming that she was much better than I at getting in the prescribed 8 glasses of water, "I drink champagne all day, didn't you know?" she replied. So her answer about her handwriting...sort of made sense.
    I had experienced with my mother how very bright folks with dementias are very good at instinctively making up explanations for their strange behaviors and ideas...but I was not thinking about that at all.

In February 2009, Pam reported to me that she had hit a parked car. "I tried, I tried three times not to hit it," she said, plaintively. Her sad tone should have alerted me. It did not. She also reported she had lost some weight...more than 10 lbs...and attributed this change to walking. I asked what she was eating and she replied, "I have oatmeal and an apple every day." It was partly my fear of her anger that kept me from insisting on visiting...and the memory of my icky last visit to her home in Connecticut. I did offer to come up, but she declined the offer in no uncertain terms....

In March, she said she had fallen down the stairs in her townhouse and was in pain. I urged her to go to her doctor. Some days later she said she had gone to the doctor, and they had taken scans and she was to get the results later. I asked her to be certain to call and tell me the results.
    The following Sunday morning I received a call from one of her neighbors to report that that she had assisted Pam in going into the Emergency Room. Pam was staying in the hospital and had asked them to call me. The full tale of that weekend took the kind and brave neighbor the better part of an hour to tell. When these neighbors, whom Pam had known for the four years she owned the townhouse, had returned a few months prior from their annual six months in Alaska, Pam did not recognize them.
    Since their return, they had seen Pam being increasingly vague, distracted, and unable to manage her car. They had seen her sit for hours in her car by their mutual mailbox. In trying to maneuver her care through the spacious back alley they shared and into her own garage, she had hit a small tree past the alley edge.
    On Saturday, the husband observed Pam standing in her garage, looking at nothing, with mail and keys in her hands. When he returned from his errand an hour later and she was still there, he walked up to her and asked, "Pam, are you ok?" "Yes," she replied and promptly dropped the mail and keys, picked them up slowly, and dropped them again. He went home and asked his wife to talk with Pam. This neighbor had been afraid of Pam and her meanness and anger and bad language...and her gun…for some time, but she went and talked Pam into calling her doctor. He told Pam she probably should go to the Emergency Room.
    I got in touch with the hospital and the doctors. It took some doing to get them to talk to me, as I was not a family member. One of the doctors in the practice (their ads say they specialize in seniors) eventually confirmed that Pam's back was fractured, and her elbow was "more broken than any I've ever seen." Within the first week of her hospitalization, a surgeon fused her back with a new procedure involving glue, set the arm, and sent her to a nursing home to convalesce. I asked her personal physician, whom she had seen in January, "Didn't you notice her weight loss?!" He replied that she had said she was dieting.
    Given all that I eventually learned about what she had been doing and not doing, and after putting together the slowness of language and the fact that Pam's particular dementia has visible effects (people with this dementia appear "pop-eyed" as they try to see what they are having trouble seeing, and their gait is very unsteady), it seems stunningly bad for these doctors to have failed to notice what trouble Pam was in. And yet, they did not know her well, and I did...and I had not "seen" or heard it. And I know that realizing the problem would probably not have changed the outcome of this story in any way.
    I quickly told Barbara, Pam's other friend listed with me on the Power of Attorney for Health Care, and we agreed to travel to Medford together. Concurrently, I searched via the Oregon State Bar website for an elder-care attorney in Medford. The lawyer I connected with (other lawyers on the list did not answer my message, or were out of town or busy), his staff, and his "service list" would be invaluable as I moved thru the process of Pam' s illness and demise.
    A week later, Barbara and I flew to Medford and visited Pam in the nursing home. Pam was alert and recognized us both...after a minute. She was able to move with some slowness but was pleased to see us. We asked what Pam wanted us to do at her home.
    "Dust," she said...several times.
    We offered that we would also get the bills paid.
    At one point in the conversation, Barbara commented that she could no longer wear high heels and offered Pam and me a few pairs in her size. (It sounds weird for nursing home conversation...but you talk about...whatever.). Pam exclaimed, "Oh, I would...I can use some white ones for summer!" For me, this was the clearest sign yet that Pam had lost her mind. Barbara had absolutely no taste or style and Pam would never be caught dead in Barbara’s clothes!
    After one afternoon of our personal assessment of Pam's status, I called the lawyer and got the name of a "traveling notary." This notary, Sandy, met us at the nursing home the following day, explained the Power of Attorney to Pam and had her sign it. Sandy proved to be very handy: I later employed her to collect Pam's mail and other minor tasks for which her charge was much less than the gerontology consultant's rates.
    For all the following actions, I talked to Barbara...but she clearly had no interest or desire to be involved in any decisions regarding Pam or her estate. The other two heirs felt the same. None of these friends had kept in touch with Pam, nor she with them for the past two years. So I took complete control. It should not surprise anyone that I was completely happy to do this. I did not keep a journal, so I am guessing on the exact progression of most of the following actions I took to manage Pam's care and estate.

I figured that having someone local in Medford/Ashland Oregon to deal with some of the daily issues of Pam's care was essential, even though it was unclear whether Pam would be able to return to her home and live somewhat independently. I discussed the abilities of the various "gerontology consultants" on the lawyer's list. When he told me that one of them was a "ball buster," I said, "Oh, that's what we may need for Pam," envisioning someone who would have to visit her and ensure that she took her meds and ate, etc. I phone-interviewed this woman, Clare, and met her in person on my next trip north. Clare was invaluable and became a friend. We shared the ups and downs of Pam's progress and did not always agree.
    Despite Pam's vast knowledge of legal and fiscal matters, and her not inconsiderable estate, she had not established a Revocable Living Trust to avoid heavy costs when distributing the estate, quelle surprise! ( I knew about this stuff from managing my mother's estate during her dementia and eventual demise.) Complicating Pam's fiscal situation was the fact that—due to her native caution, and all the moving, and maybe her brain—she had about 10 different brokerage accounts and other fiscal instruments all over the country.
    Luckily, her personal files were in great order and I took them from her home office. With the lawyer's assistance I created a Revocable Living Trust and gradually got all of the fiscal elements moved into one "basket.” I knew a personal financial advisor company and they helped me simplify and decide when to sell the various stocks, etc. During the following two years, I paid all of the condo bills, medical bills, lawyer bills, and gerontology consultant fees from the trust. I was reimbursed by the Trust for my travel, and I took a one-time payment of $1,600 and...I kept the diamonds.
    I called the veterinary office I found in Pam's address book and agreed that one of their younger staff would take Pam's last cat home to board until we knew what was going to happen. When it became evident that Pam would not be living outside of care…ever, this woman asked to give the cat to her mother, who was delighted to have a cat.
    At the nursing home, Pam made the staff crazy with getting up and her chair alarm...which she loathed…going off all the time...and her salty language. Ultimately, after some physical therapy, as her allowed weeks at the nursing home expired, it was agreed that Pam would be moved to a residence with a specific unit for Alzheimer's patients as her mental and physical evaluations continued.
    At this dementia residence she spent the almost two years that followed.

In the first months at the "Home," Pam was notable for falling (occasionally requiring visits to the Emergency Room at the local hospital), nudity, and peeing in corners. Clare took her to medical doctors' appointments and to be evaluated by a local testing psychologist. Clare told me that at the first meeting, Pam stared in her baleful/pop-eyed way at the psychologist and told him coldly that his fly was unzipped. I met him when he delivered his final report...and he deserved Pam's nastiness. He was the coldest practitioner I have ever met. He was telling me that my dear friend had an irreversible dementia and would likely die within a year...and he exhibited no compassion or empathy and was exceedingly frosty. Some folks just like to work the data and they belong alone...with the data. Clare and I made a bet on Pam's surviving the year. I don’t remember who "won.”

Clare would take Pam out for weekly outings the first year and a half, to lunch and to shop. For example: Pam said she needed to send Christmas cards. Clare took her to various stores to search for cards. Of course, most did not suit Pam. She ultimately bought a few, but could not organize herself to send them. She continually complained that the restaurants they went to were not to her liking. Of course they weren't! This was a gourmet cook with "champagne" habits. All that Medford offered was chains somewhere above McDonalds. I saw the receipts when I reimbursed Clare. I struggled to explain to Clare and the staff at the "Home" that Pam needed a place with tablecloths and wine.
    After the first three months, the local doctors and the psychologists declared that Pam had "progressive supranuclear palsy.” I naturally googled this early onset dementia and the sources all said that it was not hereditary, that sufferers exhibit visual problems, balance problems, and judgment problems. It all fit...except that Pam's descriptions of her mother (Gertrude's) mental problems and her dementia, which I remembered, were eerily similar.
    I spoke in these last years to one of Pam's cousins who confirmed that Pam's maternal grandmother had similar issues. As a specialist (I do HOPE you are laughing), it is my considered opinion that Pam suffered from this hereditary disease a good deal longer than any of us realized and that her alcohol consumption allowed sufficient brain cells to die off and this disease to flood in...but who cares what I think?

I flew up alone to visit Pam, see the lawyer, meet with Clare, etc. As Pam and I walked around the circle of her unit in the "Home" (designed so that "wandering" Alzheimer's patients would be safe), I gently explained that she would likely be staying in the Home, and asked her what I should do with her mink. "Sell it," she replied. This was my way of getting her to agree that her belongings should be sold. But I did not ask her if I should sell everything. I did not think she could still grasp that concept.
    At her townhouse I collected the mail and listened to her answering machine. The most interesting item was the five increasingly concerned calls from Nick, her married lover. You might remember Nick from prior Pammie stories. As his wife was a known witch, I could not call him directly at his home. Eventually, he phoned me and I explained the situation and gave him the number of the Home. He continued to call Pam and send her quarterly checks for $2,000 until she died. Occasionally he would call me to understand why she did not speak much, or to understand, in broad terms, the state of her disease.
    I began to do what I do well: organize tasks and accomplish them. After consultation with the doctors and Clare, I searched for someone to sell all of Pam's worldly goods. As you might recall, Pam had a great deal of very fine household, art and clothing and jewelry and accessories. Even though Ashland had some, well...class...I did not see that a "garage sale" type event would work. And I had no intention of working that hard. I found two estate sales firms online in Oregon. One had photos of a big red barn of an office/sales space and of all the employees in red flannel shirts and overalls. One featured two cute men in tuxes. Duh!
    I phoned the cute guys and explained my dream, that they would drive all the way down from Portland to Ashland, load up a truck and help me out. I must be real cute on the phone...because they did. When they arrived and saw all that there was...they tried to go out and rent a bigger truck. They were good as their word, selling these goods off in small batches and sending the Trust checks. It took over a year, and most of the finest of the items fetched good money to pay Pam's bills.
    Before the estate sales guys had arrived, I spent the better part of one day going top to bottom in Pam's three-level townhouse, looking at everything. The estate sales guys had cautioned me not to pack or unpack anything and not to assume what would interest them. I had asked Barbara and the two other heirs what they wanted. Each picked one item and I had them boxed, insured, and shipped at FedEx. I finally found Pam's jewelry, after asking Pam where it was. Thrown in a velvet Chivas Regal bag on the top shelf of her closet! The estate guys suggested I keep the small diamonds. I did, and had them designed into a ring that I wear daily.
    By the time I got to the bottom storage room adjacent to the garage, I was pooped, so I was not prepared to be thorough or careful. Pam had never fully unpacked from her last move back to Ashland, and I found boxes of fine plant and animal prints, another set, or three, of fine china, and her photo albums. I glanced at the albums, took a few photos of her friends that I knew and let them go.

No need to give you all the details of all the analysis of bills and discussions with clueless vendors for adult diapers and meds.
    Pam's condo was not so easily disposed of. We went into and out of three escrows in that time of lousy real estate markets before it finally sold.
    Another person very involved in Pam's care was the manager of the Alzheimer's unit, Charlie. Charlie and Clare became convinced that another evaluation should be done of Pam. Ultimately, I agreed. They made an appointment at Oregon Health and Science University and patiently transferred the not-walking-steadily Pam onto and off of planes all day. The staff at OHSU had read all of Pam's recent medical files, took one look at her, and confirmed the diagnosis and prescribed some medications. Aricept (which I had read was strictly for Alzheimer's!) and other assorted anti-depressants, etc.
    Pam began to improve! She was steadier on her feet, very helpful with the other more demented residents, and increasingly even more "communicative" and very pissed off at her confinement. At one point she demanded to go to her dental appointment. "You don't have a dental appointment," the Home's staff insisted. "I need to go in the black car!" she yelled. "Look outside," they said, "your BMW is not there.” Pam fumed. A few moments later she returned to the front office and sweetly asked if she could have a haircut. The staff of course agreed and allowed Pam out of the locked ward toward the beauty salon. Pam made a beeline for the front door of the residence and began running across the parking lot. Yes, the staff caught her before she was run over. See what I mean about the smart ones with dementia? Really...had the Home staff NOT figured her out? I later received Pam's mail, and there was a letter from her dentist reminding her that one should cancel appointments, not just fail to show up! She did have an appointment and must have noticed it in her datebook. Dementia is weird.
    As she continued to improve, all of us were challenged. Me certainly. She kept insisting that she could live on her own. Clare and I thoroughly discussed the possibilities for weeks. But Pam had not demonstrated the judgment to understand her limitations and would have still required a personal "watcher,” likely 24 hours a day (since you could not "imprison" her in her own home or apartment—dang!) and she would not have tolerated that, and it would have been much more expensive care. And hard to find the correct type of person, as Pam would be able to think around most folks. And, yup, I'm still trying to explain why I had sold everything so fast. Pam wanted to buy a new home, so she was given the phone and a phone book. She called some local real estate folks whose names she still remembered...but she was unable to continue the conversation when they asked her questions. She would say she could fix her own meals, but when questioned, could not describe the steps to do so. She gradually realized that I had sold her things. She was confused at first, then livid. In one particularly painful phone call, she asked, "And my photo albums...?”
    "Gone," I replied. "You never talked about them...," I weakly remonstrated.
    There was a long silence, then she said sadly, "I would not have done that to YOU."
    I felt very bad. Eventually, I realized that she was as efficient as I was, and had she been in charge of my stuff and received the evidence of decline and the diagnosis, she would equally have gotten on with the work at hand...partially to provide income to pay the bills, but mostly because it was there to be accomplished....If there is a lesson, perhaps it's that I move too fast.
    And then, as was not unexpected, the disease re-asserted itself over the medications. I made one final trip to Medford, arranging for Pam and me, with Clare, to go out to the high-class restaurant Pam used to frequent in Ashland. I made the restaurant reservation and hired a limo...so the three of us could travel in style from the Home. Pam almost fell, trying to open the heavy restaurant door and walk into the restaurant. She had difficulty trying to read the menu, but successfully ordered. She was sloppy in eating (visual and motor problems) but was quite happy to have a good fish dish and a glass of wine (her last...I suppose...now that I think about it). When we re-entered the limo for the trip back, the nice driver cheerfully asked, "Where would you ladies like to go now?"
    Clare and I chorused, "The Home."
    Pam said, "The grocery store!"
    Clare and I said "No,...uh, why, Pam?"
    She said, "Well I have to buy something to fix for dinner."
    Pam began to fall again and was in the Emergency Room sometimes more than once per month. She was more quiet in our weekly phone calls, barely responding to my questions or "news,” and ultimately stopped responding at all. I would still call and just talk to her. I had Clare and Charlie tell me what was happening with her. One week, I very gently told Pam that, when she was ready, it was okay to leave. "Nick" called me during this period and I made certain that he understood I would be unable to contact him when her death actually occurred.

Pam died on St. Patrick's Day 2011. As happened when my mother died, I received the phone call notice of her death while at my art class. It did help me finish a painting I had been struggling with, and I called it, "Pyre for Pammie.” Wishing, as I had with my mom, to send her off on a fiery barge...into the....

    The rest was just "clean up," paying final bills. I had paid for her cremation as part of my tasks early on. I found a church in Orange County (where Pam and her friends had lived) that matched the requirements Pam had written down at my request years before. I placed obituaries in the Los Angeles and Orange County papers. The service, again...following the outline Pam had given me years before, was attended by about a dozen of us. The piano playing was very sweet, my eulogy was funny. The champagne was excellent.
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Copyright © 2014 by Susan C. Price

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