A View from Me in Connecticut @megfromct-blog - Tumblr Blog

A View from Me in Connecticut turned 10 today!

Elsa on her first visit to see Garrett, her second son’s new place in Nova Scotia. He pulled her along with his tractor as she could not walk without her Oxygen. This was their first visit before they had the RV to stay for a long time. She and her husband Rob only stayed for a week really as she was too worried about my mom to spend more time at that moment. Her son and his life partner girlfriend were coming down for the wedding later in the summer anyway. So she would see them again before long.

So we make the best of what time we have left

Right after mom and I rolled out of her local diner, she said she wanted to go to her bank’s ATM and get some cash. I told her that we needed to go to CVS to buy some cards. Earlier she had told me that her friend Shirley had a birthday and my sister-in-law Susan’s birthday was this weekend.

So we went to her Wells Fargo bank on the corner of Lee Highway and Glebe Road in Arlington. I got the cash out of the machine. In CT where I live, you cannot put your card into the machine unless it is one of those new chip readers today, but in 2012, all you could do was quickly swipe. But my mom’s machine was outdoors, not in a cubicle, and it ate your card for the transaction. As I was unaware of this at the time, I took the cash, got back into her car, and drove down Lee Highway to the CVS at Harrison street.

Since my mom had a handicap parking thing, it was always so convenient to find parking. I pulled right in front, then I got out and started to take out her scooter from the back of her car. She was standing up and trying to get out of the car, and get her cane. As I had gotten the scooter out, I was going around to help her walk to her scooter. She would often hold on to the car roof as she walked down to the scooter as she had trouble keeping balance. I was trying to push her along and she was saying, “wait, wait.” I was trying to push her out of the way so I could close the door. Then I heard her say, “I can’t move because my pants are falling off!”

I looked down at her, and indeed, her pants had fallen to her ankles! There she was in the CVS parking lot flashing all the cars on Lee Highway in her undies! We started to laugh. It was so comical. I then pulled up her pants and helped her get into her scooter, then she took off into the store. The story still makes me smile. My mom had been losing weight since she had gotten so ill, and although she loved weighing less, and felt great about it. One because she could actually walk with a walker and a cane now, and before she had been so heavy she could not hold herself up. And two because my mom was seriously body image critical and complaining about her size was her daily mantra my entire life, so for her to feel svelte was a huge moment of pride. Putting on pants with a belt was a new thing, and one she relished with joy. When we got back into her house I checked to find her a belt. Interestingly, she had few belts that fit her, but eventually I found one.

While in CVS, she picked out cards for Susan and Shirley, and her youngest sister, who had a birthday in August. I asked her about all her social needs and then she went tooling along to the make-up aisle. She picked out a new lipstick and mascara. That made me realize that she wanted to look nice. My mom had serious pride. She was a person who thrived on approval and attention. When she was no longer getting it for her looks, my mother became the woman who could cook. She loved to entertain so she could show off all her talents and skills. My mother loved the spotlight.

So as we were at the counter to pay, my mom could not find her Wells Fargo card. I was sure I had put it back in her purse. So I looked, while she then brought out her Amex and paid with it. I was concerned. I looked all over the car when we got back to it; I upended my mom’s purse. Then I realized I had left it in the ATM! So I got my mom situated, and made a mad dash back to the ATM hoping it was still there.

Of course it wasn’t. I was not aware that the ATM basically eats the card after a set time if a person doesn’t take it out. Similar to the MTA machines for the subway Metrocards in NYC. I have had a metro card fully loaded get eaten, but I had learned the process on how to get one returned to you, and I can attest that yes, the MTA, does in fact, return a fully loaded Metro Card to you with the amount you had on the eaten one. So in a blind terror, I called the Wells Fargo 24 hours hotline while sitting in its parking lot to report her card lost. A women on the phone had to ask all these questions of my mother to ascertain that she was the card holder, etc. So we did and then I took my mom back home as the new card would be available at the branch on Monday. All was taken care of.....but I knew my sister Jenny would be all over this as she acted as if she had control over my mother. Any mistakes were fodder to yell at my mother or berate one of her siblings, etc.

When we got back to her home, I helped my mom write out the cards to send to her friends, Susan, and her sister. She had a habit of keeping large denomination bills in an envelope in a side pocket of her purse; I did the exact same thing! I kept cash in larger amounts in an envelope in the side of purse. So she had me put a $50 in with my sister-in-law’s card and a $100 in with her sister’s card. I told her that I would mail them on my way back to CT. I went onto Facebook with her and answered some emails with her. She had tons of emails which were spam etc. She had also opened some spam connection on her Facebook page, and I was trying to get it removed. I had to change her password to do it. So I did. I emailed my eldest sister Elsa with all the information and advised her that my mom had Skype set up on her computer now so she could Skype me when she was back and was there with my mom.

I then took the cards and got my stuff ready to leave. I had gone through the mess of papers on my mother’s counter. I had constantly annoyed that my sister Jenny would leave things such as butter and mayonnaise out on the counter and not refrigerate them. I had seen bugs calling along my mother’s kitchen counters. I told my mother she needed an exterminator. Also I had to wash my mother’s kitchen floor and counters, as my sister Jenny was a slob and left crumbs and dirt everywhere after she left, so no wonder my mother’s home had bugs!

I was waiting for Jenny to show up before I left to go back to CT, but Jenny was not there and seemed to be taking her own time. My mom was watching TV, and I told her I was on my way. She kissed me goodbye, and I went to get gas and find a mailbox, which I did on Glebe Road, and mailed her cards. I then went back to CT.

At this time it was the end of June. The following week she had the endoscopy, with resulting pain and recovery challenge. The storm took me to Elsa’s, and Elsa’s left for Nova Scotia and she was to come back before the end of the the 4th of July week to attend a meeting as my other had a meeting with the Hospice people and so forth scheduled. All was supposed to be with an aim at getting home care for my mother to help her weather this storm and recover by the time my nephew married at the end of August. We wanted her to feel well enough to go to the wedding.

The week Elsa went to Nova Scotia, my sister Jenny called me as Elsa was not around to speak to...and talking to her on the phone was less difficult than in person. She was in need of support. She also, or at least verbally to me, acknowledged that my mother had no cancer and was supposedly going to get better. She also let me know that the ATM card was missing. I told her that I left in the machine and mom was getting a new one for her to pick up at the branch. I was unaware, but at that time, Elsa had been learning that my mother’s long term health care policy was a big sham. She wasn’t going to get a dime towards any of the care, and the caring woman that was coming cost more per week than any reimbursement would have provided.

I told Jenny that even when my mother’s policy kicked in, she was not going to have enough money to pay for the care. She would have to sell some stock. At this point, I did not realize how conniving my sister Jenny was and how manipulative she was when it came to my mother’s money. After all Jenny had changed my mother’s will so she would have a new home as her retirement home bought and paid for with my mother’s money. Then between what she collected from her 15 years at Harris Teeter and Social security, she could survive rather nicely. But without my mother’s money she could not buy a house outright and have all the stuff she was inheriting from my mother in it....so little did I know that Jenny was going to take those financial fears into a huge rage attack against my mother.

But my mother told me the following weekend that Jenny had a huge tantrum screaming how she was not going to be taken care of if my mother spent all her own money. Seriously. So my mother to assuage Jenny told her day care helper to not come on certain days to save her money so Jenny would be taken care of for the rest of Jenny’s life. My own sick mother denying herself adequate care to soothe her raging bull. Unbelievable.

What was worse, is that each day my mother did that, one day was deducted from the initial waiting period for my mother’s long term care policy to kick in. My mother paid over $125,000 into that policy. She died one day before the full 90 days were done and before the 91st when she could technically collect $125 to offset the $225 she was spending each day for care. So basically, my mother was a patsy for that insurance company. I warn everyone: DO NOT BUY A LONG TERM CARE policy, unless you are planning on having a brain injury or a massive stroke and living for years and years. As today with most modern medicine, you truly are not going to have that long to live.

The days of people lingering in nursing homes, other than those with dementia or Alzheimer's, are rare. Few people end up living in nursing homes as end of life care, and Hospice care usually ends of as being far less than even the 90 day waiting period; and Hospice care under Medicare is not a cost to the patient. Nursing assistance is a private cost that is, quite frankly, super necessary for families to chip in and provide if there is no help, because those people are so vital and comforting to everyone when dealing with end of life care. I have a plan amendment to my own health care policy that I pay monthly which covers end of life care. It is not a long term health policy, it is part of my health care premiums and is a couple of dollars per month. Neither Elsa nor I considered getting any such policies for ourselves, the premiums are quite high, and as you dump all your income into them, most of the time, you never come close to getting what you paid in back at all, let alone any interest earned.

#mommy #long term care #waste

Still holding that window of Hope up

It is with some bitter irony that I am writing today about the weekend before 4th of July in 2012, the weekend of the 4th of July 2016. That weekend was June 30th, my eldest sister was in Nova Scotia with her son, she was coming back either on the 4th or right before. Right now the exact details are a bit of blur, but I do know that I went down to see my mom. The last journal was actually this weekend as this was the weekend of the storm. So all that happened then was actually right before 4th of July.

The weekend prior to that one I drove down to see my mom as well. She was seeming to be a bit better. This was right before the endoscopic procedure on June 28th. This weekend was the one right after my nephew’s fiancee’s bridal shower on the weekend of the 16th and 17th.

I drove down that weekend of June 23rd and 24th and arrived on the Friday night. My eldest sister was there to greet me, and she went through my mom’s bedtime routine with me. How to help my mom get situated into bed with all her pillows arranged as such in the hospital bed. How to put out the pills for during the night, etc. Then my sister left and I went sleep.

The next day, my mom and I spoke in the morning a bit. My other sister was to come to see my mom during her lunch from work, and I went to Tysons Corners to do Pilates. When I got back, my mom was home, and we decided to go out to eat at the diner near her on Glebe Road in Arlington. So we packed up her stuff, got into her car, and I drove her to the diner.

I learned how to take her scooter in and out of her car with its little hydraulic lift she had installed into the back of the car. She scooted up the diner’s ramp and we went inside to eat. My mom was feeling ok, and at that moment, we both felt she was on going to recover. She was having another procedure the following week, and my eldest sister had gotten more MD appointments, which both she and my sister Jenny were going to with my mom.

At the Diner, my mom told the waitress I was her baby. The waitress complimented me and my mother. She was very kind to wrap up my mom’s food so that my sister could have a meal at home. She also put my mom’s iced tea in a To-Go cup with a straw for my mom. At that moment, my mother reminded me of her mother. I remembered my Mor-Mor when I was very small taking us to this shopping center in St Petersburg FL where she lived. Small attention given by store clerk and waitresses made my Mor-Mor smile. She had a strong Swedish accent. During my life she often would divorce herself from her homeland and act as if she did not have an accent, but as she aged more, she began to love when people asked her where she was from. It opened the door to a social moment. I saw my mom enjoying the opportunity to just talk about her life, her children, etc.

My mother was a very accomplished woman, who achieved much in her long life. I should only hope to come close to 1/5th of what she did. My mother was born during the depression to immigrants; her father was Syrian, who had emigrated to go to Columbia medical school, and her mother was from Sweden who was sent to New York for some contrasting realizations about her comforting life in Sweden. She wasn’t meant to stay and become an American, her father had sent her to get a life lesson. She did; she got pregnant by a man 28 years older than she. She was 17, he was 45. He was 46 when my mother was born. He died at 68 and my mother was 21, not quite 22 yet. Her mother was a strong woman, a beautiful woman, and quite resourceful.

My Mor-Mor adored her daughter, who was precocious. They both grew up together. My mother was her mother’s best friend and protector. When my mother married, her mother felt abandoned. My mother also mothered her sisters. She had two younger sisters. My mother went to George Washington University upon finishing high school. Her father was not for a young woman going off to college on her own in a city far from where they lived, but when he learned that Harry Truman’s daughter was in my mother’s class, he was impressed. So she went.

She was a highly intelligent and ambitious woman; it was WWII and she had a grand social life at college as the GIs were always in DC and there were USO Dances each week. That is where my mother met my father. He was a Captain in the Army at that time. My father was a lawyer. My mother wanted to be a diplomat and enter the foreign service, but at that time, the only jobs for women in the foreign service were clerical. My mother thought too highly of herself and her intelligence to settle for administrative work. She had befriended a young Jewish woman her first day at school, whose father worked for the Washington Post. She was also the eldest in her family. She and my mother hit it off from day one. They remained friends until the day my mother passed away. Dr. June’s father Henry and her mom, Lil, were like parents to my mom when she was in college.

When my mother’s parents came to DC to see her, the Cohens had them stay in their home. The Cohens and my grandparents became fast friends. When Dr. June was finishing as was my mother, her father told her that she should go to Medical School, as my mother had declared she was going to law school. When an advisor my mother had at GW broke the news to her that she could not become a diplomat, he suggested she go to law school. So that is what she decided to do. My mother impressed Henry Cohen with her strong course of action that he told his daughter, June to apply to medical school. My mother applied to Law School, and June to medical school. Dr. June loved science, especially Chemistry. My mother loved the law. Together they pioneered women’s professional education. There was a quota system when they were in graduate school and Dr. June fulfilled both a Jewish quota and a female quota. Dr. June was one of nine women, and my mother was one of six women.

My mother was under tremendous pressure to sleep with my father, but my mother was a good Catholic girl. One of her good friends was a young woman, also in the law school, who was being hotly pursued by a married or soon to be divorced man. He was a charmer. She got pregnant. So he had to get a divorce and marry her. Miraculously, GW let her stay and finish her semester at law school before she had to withdraw. Ethel would also become a lifelong buddy of my mother’s; she never did finish law school, but she had along and accomplished career as an English teacher in the Massachusetts public schools. My mother was so challenged by the whole GI song that they were leaving, now or never, etc. My mother broke up with my father, but he also was a charmer and continuously wrote and called her. Neither her father nor her mother were too fond of him because 1) he was divorced with children and 2) he wasn’t Catholic. However, my mother eventually relented and she did marry him on July 4th in 1946. My father was eight years older than my mother.

My mother after the wedding and honeymoon in Yosemite, as my father was stationed in Livermore, CA, went back to Syracuse, New York to be with her father who was dying of pancreatic cancer. My father was assigned to help with the occupation forces in Japan. He went to Japan, and my mother went to nurse her father. She was upset that he was so frail and ill. She nursed him as he proceeded to waste away. My father was insisting that she join him in Japan. She was so emotionally torn; but there was a ship leaving Seattle in December. My mother was to be on it, so that she would arrive in Japan around Christmas time. Her father was alive, and it broke her to leave him, as she knew he would not live much longer. She took the train west and boarded the ship. While they were at sea, her father passed away on December 21st.

My mother arrived in Japan to the news of her father’s death and the realization that my father had been sleeping with his Japanese whore. My good Catholic mother believing in the fairy tale of American Boy falls for American Girl, etc. was so distraught, she attempted suicide. My father was horrified and then set about to make things right, but my mother was so shattered on so many levels.

She eventually came to participate fully in her new Japanese life. She taught Japanese children English. They lived in two or three different locations while there, but she regaled us with stories of Osaka, the monkeys walking at night on the roads, and the earthquakes. My sister Elsa was made in Japan. My mom had challenges trying to find good nutrition in Japan in the form of dairy. She, as were a whole host of Western women, was told that pregnant women needed to drink milk, and a lot of it, but at that time Japan did not have any dairy cows. So every month a ship would port from the US Navy with supplies and that is how my mother got cream. She was one of the most enviable hostesses on the base because my mother had her mother ship her 50 pounds of onions, which were also no where to be found. Many GIs could not eat the locally grown produce as the Japanese used waste as a fertilizer. y mother feared for the baby, so she was ultra careful about what she ate. She told me that when she first got to Japan, she bought beautiful looking vegetables grown in the fertilizer and ended up with dysentery. So from then on, it was boil what you bought or get it from the supply ships. She had parties and loved to entertain. She bought herself beautiful Japanese silk outfits and tableware, and she embraced the Japanese style.

But as she was in her second trimester, she began to worry about delivery. She was adamant that she wanted to have the baby in the United States. Her mother was in Livermore now working as a nurse in the Veteran’s hospital and had a little bungalow she lived in where my mother set sail for about 8 weeks before her due date. My mother brought back from Japan some amazing stuff. Growing up we had this daily dinner china...a rather large vast set of dishes and serving dishes, etc., and on the back of every dish said, “made in occupied Japan.” Years later at a garage sale, my mother decided was time to part with all of it, and a man came up to her and said it was valuable stuff, because of that marking. She did not take it to an auction as over the years pieces had broken, some were glued, and many had been worn. But that moment made her smile. She always considered it cheap stuff.

So as we exited that diner I was carrying a moment of my own history in memory as I saw my own grandmother and how our lives had come full circle in many ways.

#mommy #grandmother #mormor #memories #sentimental

Mom and I in her dining room having sushi the weekend of the big storm in DC

#mommy #love

Making Plans

I arrived back to Mom’s with her where we found Jenny had turned on everything so it was easy to get in, and the house was now cool. I put my stuff into my car as I was planning to leave as soon as I could after dinner.

After a bit, I asked my mom what she would like for dinner. I was going to order dinner, as it was too cumbersome to try and to food, etc. Most of the area was still without power, but I went online and found a delivery service and a food place that was open. I ordered us some sushi rolls to be delivered.

So about an hour later, the sushi rolls arrived, and my mom and I sat down to eat. She had loved the sushi rolls we had at our graduation/birthday party a few weeks earlier. She was having difficulty managing a roll and choked on some of the nori...I helped her clean it up. She was embarrassed, and she apologized to me. I told her no apologies necessary. She told me she wanted to give me money. I told her no. She said she owed me for the food and gas,etc. I said I was happy to do it.

Since I had been with her a few weeks earlier, I noticed how my sister Jenny was always asking her for a $20 or something for this or that she brought over. I was super pissed that the food my sister was bringing in, she was basically eating and then getting money out of my mom’s purse or asking her for it directly. She had a job. My mother paid all her bills except two. My mother also cooked for her, let her do her laundry, and countless other daily life expenses. I was disgusted with my sister’s abuses of my mother.

I told my mom that I would set up Skype on her computer, so I was truly waiting for Jenny to show up because I did not want my mother to be left alone. Jenny said she had left work, but she had yet to show up, and it was hours since she said she was on her way.

I went back and forth between my computer and my mom’s laptop. We had the same new HP laptops. She had bought one the past winter, as well as one for Jenny. I had purchased one the past fall as well. So I was tweaking back and forth to get it working so that when Elsa came to spend the night with my Mom, she could then Skype Christian so my mom could see him and speak to him, as he was not doing well. My mother was excited at the possibility of seeing and speaking live. She tired quickly and often had problems with hearing and attention. So getting it set up with her was not so easy, but eventually I got it working. I called Elsa to tell her that it was done so when she came back later that next week, she could Skype me and Chris, and whomever. I did not know that Christian did not have technology that would do well with this application at that time.

Although my mother offered much relief in terms of financial support for Jenny, she was often belligerent and irascible in her defensiveness. My sister-in-law Susan had informed me that Jenny had become a hoarder. She could be on that show as she fit the stereotype of an obese, lonely, border-line elderly woman with cats and not a huge social circle.

Jenny had a mundane job, well beneath her education level, but she was a mess about her personal grooming so any employer would find hiring such a person challenging. She had failed at her own business, and after several years of unemployment, and no opportunities, she was hired, thankfully, by Harris Teeter as a check-out clerk in its new store in Arlington. She worked for 15 years in total there, and, she was able to secure some retirement benefits.

But she would not allow anyone to see her living conditions, my mother had paid for a cleaning service to help her, she promptly dismissed them. My mother was not allowed to go up to see her place, she was made to sit in her parking lot. No one was ever invited. Susan had seen her place because my brother and she had dropped by unannounced during a visit one year before they left town. That was when Susan had seen the nightmare she lived in. Susan said there were stacks and stacks of stuff all over. Food packages, papers, ashtrays, etc. The volume of crap was astounding. She also had roaches and infestations, etc. She was in complete denial to the outside world. So when my mom bought them new computers, she would not allow a carrier tech in to install a router, so she basically had no internet. She would use my mom’s for when she was forced to, but she did not use an email regularly. She had no internet hook-up, and so forth.

When asked, she completely lied. However, that summer I asked my mother directly about it. I told my mother that Jenny had said she used email, and my mother laughed in my face. She said Jenny did not have internet and did not use email. I asked my mom why she did not get a smart phone, and my mom responded that my mother paid for their cells phones and the bills, and my mother did not use her cell phone much and was not going to pay for anything grander. So the challenges with Jenny as my mother’s gate-keeper escalated to high proportions because of the impediments to communicate with her based on her lack of technology. Often this was a problem.

I called Jenny again with no success. I told my mom that I wanted to get on the road back to CT. I made sure she had taken all her medication. I felt awful leaving her alone. I felt awful leaving her period. I went a few blocks away to fill up my tank and then head back.

Those drives back and forth would take me pretty much weekly to my mom. I spent 18 hours usually each weekend in the car. There was so much construction on the corridor, and the traffic and constant storms all summer made each journey a huge ordeal. I had hours to think. Hours to remember and hoped to forget, really.

As I drove all the way back, I felt so sad because I was worried about my mother’s mental health. A very strong and unpleasant sensation began to settle into my gut. I feared my mother was giving up on living.

My sister Elsa and I were awaiting the whole Hospice review coming up. My sister had to be back by the following 4th of July weekend as the meetings were to follow right after that weekend. I was coming back the following weekend to see my mom. And thus began the our long goodbye.

#mommy #comfort #love #death #sadness #resolved

My mom is in the Center of this picture with flowers in her hair...they are walking the Easter Parade in Washington DC. My mother’s mother is in white...My sister Jenny has the brown coat, and my sister Elsa is holding my mom and one of mom’s sister’s hands. This was years before I was even conceived.

#sisters womeninfamilies memories

Showing Mom some social media fun!

So we set out from Mom’s house in sweltering heat to drive to my sister’s on a seriously dangerous road trip as there were no lights working anywhere due to the massive storm damage in Metro DC, affecting more than 250,000 homes in a rather large radius. Elsa lived outside of Leesburg, VA in a town called Purcellville. It was a nice area that over a couple of decades had become a bonafide commuter area, and during heavy traffic the ride could be more than an hour. Elsa had told me to go Old Dominion Road to McLean, then get on Route 7 at Tysons Corners as the light situation was very difficult, and there were downed trees all the way to Great Falls, so no one could drive through. So I did, but the volume of traffic was seriously heavy through McLean. Then when we got to Tysons Corners, it was utter chaos trying to get onto 7.

However, we made it. It took us more than two hours to get to Leesburg, and when we got on the bypass which takes you to 15, we suddenly hit our first light in Loudoun County that worked. From there to Purcellville was easy going, and when we got off to go to Elsa’s, there was a brand new Harris Teeter store opened up near her house. My mom and I went into to buy some stuff, I needed more stuff for my cold. She needed to tool around in her scooter and look for food.

My mom adored food shopping. My mom was foodie from day one. She adored everything culinary: the tools, the pots and pans, the food, the recipes, the table settings; every single thing about eating and cooking, my mother loved! When I was in college, she took me to Europe for a grand adventure during my Christmas break for 4 1/2 weeks. We went to Germany, Sweden, Denmark, France, and Great Britain. We spent Christmas with my brother in Germany, then New Year’s in Sweden with family, then we tooled everywhere. Of course no matter where we went, we went grocery shopping. My mother loved to look at the food, the labels, etc. She loved the package design of things. She would point out how cat food looked in various languages, etc. I now find myself doing the same when I travel abroad. I find it entertaining as well.

So there we were in Harris Teeter, and the Air Conditioning was magnificent! During our ordeal to get my mother out there, my eldest sister had her husband and her son come and move a bed from her upstairs to her downstairs so my mom could be on her first floor. She set the bed up in her office, which was near her powder room. When we arrived, her husband came out and directed her how to ride her scooter around his back lawn to the three stairs to get inside her first floor. Then he put the walker at the top of the stairs to help her get into the house, he helped her get up the stairs by supporting her as she held on to the railing. Once inside, she could use her walker to get around the first floor. My sister, who also needed, oxygen had the ability to give my mom oxygen to sleep.

So there we were, we made it. We sat down and had some conversation with my sister and her husband about the clarity of roles we had spoken about earlier. She and her husband had to go to a grilling party that her son and his wife had invited them to, so soon they would leave us. She had a young woman staying in her home for a bit. The woman rented a room and was working on some kind of farming project. She had some sort of learning or mental disability that made independent living somewhat challenging but my sister had been a teacher in special ed and had always be a do-gooder when it came to taking in people who needed support; this young woman was very kind to us. She brought my sister fresh vegetables from the garden all the time, and my sister, like my mom, was busy creating culinary delights with all that fresh food. I was exhausted as I had been up since 3:45 in the morning, drove, and dealt with insane traffic, all while feeling so sick. I went to take a nap.

When I got up a few hours later, my mom and I made some dinner. I made sure my mom took her pills and so forth. She ate some, but not much. She was having awful pain, cramps and indigestion from her endoscopic procedure two days before. She went to relax on my sister’s couch in her living room, and I went on my computer to check up on things. She asked me to get her nail polish remover. My sister-in-law had painted my mom’s fingers and toes. She wanted to take it off. When I brought it to her, she asked me what I was doing, I told her I was looking at my friend’s postings.

My eldest sister had gotten my mom on Facebook, so my mom had an account. So I took my laptop into to sit with her and show her. We talked about my brother Dik and his ordeal. I told her I felt sad that he did not stay as he was when we was ill because he was the same as the brother I grew up with...but now he was back to the same cold person he had become. She said she was sad too. I told her I would send him these video clips. So then I showed her some, she loved them. We watched cat videos and laughed. Then I showed her Pinterest, and that she adored, especially all my food boards. So we looked at the recipes and the pictures, and she would point to one, and I would pin them to my boards. We had a fun time.

I explained how I was coping with the economic nightmares and how I was trying new avenues of outreach to keep income streams flowing. I told it was becoming exhausting finding creative ways to earn a living as the economic and political climates in CT were so harsh for small businesses. She gave me some insight, and then she told me she was so proud that I worked so hard and did what I felt passionate about....she admired that I was able to keep on working. My mother had often complimented me for my intelligence; she like to talk to me because as she put, “you think when you speak.” I know my mother liked that I had the strength to be an individual. I think part of her was simply happy that I was not asking her for money, to be quite honest. She was more than a little disgusted with my other siblings money management woes.

I then told her about how I had this super funny video called “underwear cops.” Someone had sent to me and I had sent to many others, it made me laugh so much. It was a candid camera prank, so I found it and started to play it. She was so entertained by it. We laughed and laughed as my sister and her husband came into the house as they had returned from their party. My sister made us some tea and then she discussed the sleeping arrangements and so forth.

We all then retired, but my sister and her husband were setting off on a trip the next day to see their son in Nova Scotia. He and his significant other had been there a couple of years, and they had recently bought a farm to make their own. So my sister and her husband were going for a short visit, as she did not want to stay long on account of my mom’s health, and she was paying for them to come down to go to their cousin’s wedding at the end of the summer. After this summer, they went for a longer visits in a used RV they bought and would stay for several weeks. They wanted to leave super early in the morning, so they could get to Boston to spend the night and then do the second leg the next day. We had to stay in her house until we heard word about my mom’s power.

When I got up the next morning, my sister and her husband were still there. They had ended up staying to about 10 AM it turned out. My sister had called the power company again at 7 AM to find out about my mom’s place on any wait list. When my mom was in the bathroom, my sister told me that she had has a terrible night of pain. She was in such pain. The cramping and aftermath of the endoscopy was quite intense. My eldest sister was so angry with my mother’s health care; she thought the MDs were full of it. Then my sister’s phone got a call from my sister Jenny, who had gone to my mother’s house from work in the morning during a break, and she found that my mom’s power had been restored. What great news! So my sister’s husband told her that the car was packed and ready to go, we had to drive back, so my brother in law put some of our stuff in my mom’s car. Then I told them goodbye and we would talk later.

I took a shower, then got my mom back into the car. It was still sweltering hot, but now her power was on so her AC was cooling her house down while we were driving back to Arlington. I was still so sick, but now we had power, and I knew I could get her back and situated comfortably in her own home, have some dinner with her, and then drive back to CT.

On the car ride back, the long car ride, I listened to my mom talk mostly because breathing hurt so much and was so difficult for me. She went on about her complaints about both my sisters. We had had that discussion the night before about the clarity. My sister’s husband and she both agreed that my mom really needed to make it clear that she was not senile and could make her own decisions. She revealed her thoughts to me about Jenny, which was to me a truly poignant and a sad situation for her, as a mother. She told me that she had such great hopes for her, but that no matter what, she just couldn’t find a way to make Jenny strong. She asked me direct questions as if she was taking inventory of her life and preparing to let go of it: Are you happy with the course of your life? Are you happy with your education? Did you feel that you got enough support? Do you have regrets? What would you have done differently?

Hearing her questions made me sad and alarmed on one level, but also aware that she needed to know that she did as good a job parenting as she could have....she had such guilt over Jenny and Christian as well. She felt that she had failed somehow to give them enough security to be stronger in the world. I told her that I felt accomplished and successful, and very satisfied with the choices I had made during my life. I told her there was much I was still hoping to do and obtain, but that I felt my life had been pretty good. She asked me if I went to sleep at night feeling regret, and I told her not at all. She responded to me: that is probably the best a person could hope for. I was a bit afraid to ask her the same questions she was asking me because I was afraid she was going to tell me that she was ready to die. I let her talk. She looked out the window as we inched along Route 7, she saw a sign for a summer day camp sign up...she said aloud, “I was always worried where I was going to put my babies during the summer.” She would say things in a sort of wistful way. Inside of me, a sadness took hold, as I knew she was preparing herself psychologically to leave this earth.

#mom sad death knell siblings loss

Back to life, feeling upbeat, carrying on

So I left my mom’s and drove home. I had started feeling unwell again and by the next day was sick with another sinus infection yet again. I still had work but was no where near as booked as I was in 2008....I tried to resume a routine of fitness, doing paper work, and preparing to go to my nephew’s fiancee's wedding shower.

As my Mom was still recovering and her next endoscopy was in a few weeks, I communicated to my eldest sister frequently. I had told my mom that I would set up Skype so she could talk to us and all her friends in Sweden on the computer. She was having short term memory issues, so I reiterated what I was intending to her many times so that she remembered. My eldest sister was going in to see her and stay with her, at that time, two or three times a week.

I had my mom’s shower gifts and set out to buy a few from me. Then I went to the Wedding shower thrown by my niece and her mother. There was so much gossip over this wedding. The bad feelings by my brother and his wife were pretty much known by all in her family. So I can only imagine what it was for my nephew’s intended and her family. She had a very, very large family on her mother’s side, all of whom were quite close by.

So it was a lovely’s ladies lunch at a local club. After the event, my brother and his son and brother-in-law that used his membership to host the event arrived. I told my brother is wasn’t cancer. I was there, I heard it myself. He was as dismissive as usual to me. So as I was not feeling well, I left.

I went to see my primary, and told her of these chronic infections. I also asked her when she had done the blood testing before did she check for mono? She said no. She said there was controversy about it. I asked her what controversy She told me that the virus still shows up in tests, even after you are over it. But then she said that there was a way to test for antibodies and to ascertain if it was recent. I told her that I had never ever tested positive for it before. She gave me an RX for antibiotics for the infection and did some blood testing.

It came back that I had had mono in the recent past! She apologized profusely for the oversight. I told her that I was put on Meds and seeing a therapist for non-existent depression when my fatigue was due to mono. To this day, I can not describe exactly how horrible the fatigue was and can be with mono. I never felt anything like that before, it was debilitating. But after 4 months I was better. And as my mother was now in danger, and I still had had the anxiety nightmares, seeing the therapist was actually good as the nightmares had quelled, but then I developed thrush. I was now officially broad based antibiotic resistant.

So now I had to go to see another ENT. I told my primary I was not going back to the guy who opened my ear, which did not help but made me sicker. She gave me two referrals. I went and had a CT-Scan....my sinuses were 99% engulfed in infection! I had to go see the head of Infectious Diseases to ascertain when kind of infection. And now since the beginnings of the ACA were happening, I had to have multiple MDs approve a surgery. I refused to have traditional sinus surgery as the evidence had shown it often failed and often people needed to have a second or even third surgery after a few years. I had researched thoroughly before and knew that it was not as great as it had been touted.

I opted for Sinuplasty. A procedure similar to Angioplasty where balloons are inserted into the sinus cavities and then blown up until the bones fracture. The sinus lining actually fills the fractures and keeps them open. It was not a fun ordeal trying to get the whole thing approved. It was such a challenge with insurance. The letters sent on my behalf were very strong and insistent, but still it was a struggle. I knew this was an omen of seriously bad stuff coming ahead in terms of health care. A intuitive sensation that turned out to be even more true that I could have imagined in 2012.

I told my primary and ENT, that I could not possibly have the surgery until 1) Insurance approved it, and 2) the fall as my mother was too sick. I was told that the scheduling would take at least a month if not 8 weeks to get a date I wanted. As work was something I could not miss, I selected a date that I knew would be good as I had already scheduled everything around my birthday weekend. So I scheduled surgery the day before my birthday, because I would have three days at home to recover. Now it was a wait to see if the MDs could get insurance to approve it and so forth. Then I went for a second consult and so wanted that MD to do the surgery, but he told me that my insurance most likely would not cover it at his hospital. He told me he would plead my case to his board to see if they would charge me insurance rates for outpatient ambulatory surgery. I was really angry that now health care was going to be a struggle for care.

The ENT in my own town prescribed Tier 4 compounded antibiotic drugs that were to be inhaled and flushed rather than oral antibiotics. I had to do this procedure 2X a day for a month. She told me it was last resort to try and reduce the infection. You cannot blood test a sinus so it is virtually impossible to pinpoint the exact infection to see what it could be to assign the exact matching antibiotic. So this at least would have a better shot than the oral antibiotics, for which I was now resistant.

Tier 4 compounded drugs are not covered by any insurance plan in the US, but the drugs are made specifically for the patient, not manufactured and stored in a pharmacy. The pharmacy was in California and sent overnight to you. When they called me they told me insurance would not pay, what did I want to do? I told them I would pay myself. Then they told me the drugs were $785.00!!! I was shocked. I told them I was an individual cash-payer, self-employed, I could not afford such a great amount. When the person heard this, he said “oh you are cash payer?” Then he came back and said, “you can get them under our cash-payer discounted program for $110.”

So this opened my mind about cash payer and insurance....good thing to keep in mind, because I am still a cash payer and today, all the MD’s who do not take my health care plan (which is ALL), I ask for a cash discount. Some give and others do not. But my primary practice, my ob/gyn, my gastro guy, and my ophthalmologist have all been bought by huge corporations now....so getting a discount means having to write a letter to the CEO and complain that they won’t take my plan, etc. Then I am given a 30% discount on all services from some of them. So I learned, healthcare is just another retail business these days, personal service and support no longer possible, now all my MDs save a few are wearing uniforms and getting corporate paychecks and vacations. They are employees now, no longer practitioners. Getting calls about lab tests takes a week now, no longer a day. Getting follow up takes emails and several calls to various departments, etc. It is certainly impersonal, minimal, and pretty inhuman. All just so sad. But I digress, forgive me...(remember this is my tale of woe ;-) )

So I was now on medications. But before the meds came, I went back to see my mom as she was having another endoscopy on a Thursday. I drove down in the very early morning on the Saturday....I left my house at 4AM. I had been having medical tests on the Friday so I had to wait. She had the tests and the results were out, and both my sisters had gone with her to her MD to hear the results and to discuss plan of action. I was anxious to hear what the scoop was and so forth.

My eldest sister was in almost daily contact with me while I was home for the two and half weeks. There were still squabbles and animosity between my sisters. My second sister, Jenny, was also calling as was my brother Chris not as frequently because he was sick as well. But he had gone to see his MD when he was home and seemed to be doing a bit better as his wife was ensuring he was taking his medication, and his son was now driving him. So many illness balls in the air, in our family!!! It is true what they say about stress hormones...they kick in you just as you need them to and then you seem to be able to function under the most outrageous stress. If I had not had that nightmare drug and now Xanax to sleep, I do not know how I would have been able to function at all.

I packed stuff for the drive on Friday night. I took a shower before bed so I could wake super early and drive and then I went to sleep about 10. I woke up at 3:45, got dressed, packed some beverages for the car. I usually take tons of supplements, so I had packed up baggies of my daily doses for the two days and then got on the road. I drove in utter peace and quiet. I am a night owl person, so I like to drive in the dark. Little did I know then that I would be driving that road all summer long, in the most horrible weather and traffic, hours on end. After that summer, I now thought of that drive as the “highway of death,” for that is what it truly has become for me. I make that journey now for death. It used to be the drive to my family home, but now all it is, is travelling to greet death, to me.

At 5:30 I had a text from my sister Jenny asking me where I was, how far away. I had stopped at the end of the NJ Turnpike to fill up with the “cheap” gas as gas was over $5 a gallon in CT. Now not even Jersey gas is cheap anymore....that was a sad blow for sure. I told her I was three hours away at least. I tend to speed when it is dark and few cars are on the road. Thankfully the troopers are quite sparse when there is little out there at risk. She texted there was no power at my mom’s house. I asked why. She said there had been a horrible storm. I told her that perhaps by the time I was there, it would be on. She said that my mom’s garage door wouldn’t open, so she was going to unplug it and manually open it so I could get in to see my Mom. My mom was sleeping but she had to go to work at 6:30.

So I continued to drive and when I got to the DC Beltway, I saw that it was not just a storm, it was THE STORM...trees and accidents all over. On 495 very close to the Cabin John Parkway exit, which I took to go to my Mom’s, there was a big tractor trailer on its side. 5 of the 6 lanes going in that direction were closed. rescue vehicles and so forth were everywhere. Traffic was jammed up and in the break down lane. My sister was getting anxious and kept texting. She had to go to work and I wasn’t there. I told her nothing I could do. I told her to just go. I finally got to Cabin John Parkway and started to go down the parkway and Canal road to get to Chain Bridge. Trees were everywhere and driving it was like an obstacle course run. Intersections and so forth were a challenge, some in Arlington now had temporary Stop signs up. There was no power for almost a week as it turned out and more than a 1/4 of a Million people were impacted in the DC Metro Area.

I finally got to Chain Bridge, but Chain Bridge Road was also impacted. It was around 7 AM. I was seriously sick as the drugs had not come and my sinuses were so infected. The pressure was intense. Then I got a text from my eldest sister Elsa, who had driven in to sit with my mom as my sister Jenny had left, and at this time we just had care during the week, so Elsa came in so she would not be alone. Elsa said to drive on Old Dominion Road to get to her, but I told her that I had to find a CVS because I could not breathe and needed medication. There is one near my mom’s house on Williamsburg Boulevard, but it was not open as no one had power. I drove to Bailey’s Cross Roads and that was scary as there were no traffic signals. Eventually the entire intersection was just closed because police could not even attempt to direct traffic there. I found a store that was open. I got some Robitussin, Throat spray, Advil Sinus, and Kleenex. Then I made my way to my mom’s house.

It did not help anything that it was 104 degrees that weekend. It was the weekend before 4th of July vacation. It was typical metro DC weather for summer: hot and humid. My mom and sister were sitting in her den, which was still cool and lit from windows. My eldest sister said she had AC and power at her house. Her’s was one of the only ones in her area, Purcellville that was fully powered. My eldest sister had called my mom’s power company to alert them that she needed urgent assistance as she had to use oxygen to sleep, etc. They said she was listed as a priority. So we had to wait.

While waiting, my eldest sister told me, in front of my mother, about the test results and the recent endoscopy. My eldest sister truly wanted another MD to look at all the results as she had lost faith in my mother’s MD. I heard a story that seemed as if they had no idea what they were doing with my mother’s care other than asking for these constant endoscopic procedures to collect stones from her bile duct. There was no course of action prescribed, no dietary restrictions, etc. I was a bit skeptical as well. My eldest sister told me privately that my mom’s MD told them that hospice should be called. I asked her why we would invoke hospice if my mother wasn’t dying. She said that my mother qualified for end of life care, and if she did not die then she got the support and care she needed via Medicare rather than having to pay for it herself. So this was supposed to help her get more nursing attention. I was told this by both sisters actually.

So my other sister Jenny was given the contact information as now she was the executor and my mother gave her power of attorney for an advanced directive. But my mother was, at this point, still writing her own checks, still cognizant and very much capable of making her own decisions. She reiterated that to both of my sisters that morning in front of me. At this point, my mother was adamant that my sister Jenny had no business paying her bills or making her decisions. My mother believed this story that hospice was coming to free her of financial burden and get better nursing assistance in her home. So that was the plan..it was the plan my sister Jenny confirmed to me as well.

That upcoming week, my mother had appointments with the Hospice case worker, case manager, MD, and nurses. So we still had the Visiting Angel care, which my mother was paying to help her every day and keep her company, and now we had home medical care coming as well.

Elsa then left to go back to her home, she told me to call in a couple of hours as I might have to drive my mom to her house to spend the night or until the power returned as it was just going to get hotter and more oppressive as the day grew on. Jenny came during her lunch break, which was about 10 AM as she had been at work since 6:30. She then gave me her impression of what the MDs said about my mother’s test. Hers was a completely different perspective and different information. I had figured I would get different views. When it came to medical information, often I took Elsa’s recounting with a grain of salt as Elsa’s was always more gloomy. Jenny had confirmed that no one said she had cancer. (little did I know within three week that story would change...my mother never did have cancer and we will never know why she truly died. I have my own thoughts about it all)

So then Jenny regaled us with the issues she had at her store during this power crisis surrounding us. People were mobbing them for ice. The store was operating under a generator. It had reduced AC etc. She ate her lunch and left. I told her that I would probably end up taking my mom to Elsa’s. I told her I would manually close my mom’s garage door.

After she left, I started packing stuff to take for my mom. Her medication, walker, clothes, pillow, etc. I moved my stuff to her car, as we had to go in her car because her car had her scooter. I then sat there with with her in the den, and we chatted about the problems with the sisters. The squabbles, the confusion as to direction, the barriers put up, almost like turf wars. I told her that she needed to make it more specific and clear as to how people should help her with her own life. I told her that she had to clarify to Jenny what to focus her attention on versus what Elsa could help her with. Elsa was far better at calling the Long Term Care people, all my mother’s paper work and so forth. Jenny needed to stop impeding others from supporting because all the rest of us were getting dueling phone calls by the two of them. My mother understood and said she would try to figure it out. She started to write a list, but stopped as she was just worn out by the heat and the intensity of the sisters.

When I asked Jenny during her discussion at lunch about something Elsa had told me, Jenny went off like a firecracker and started yelling. The yelling was exhausting. My father yelled. When I saw her behaving like this, I knew she had become my father; I then saw that my mother responded to her as she had my father. She just grew tired of it all and sat waiting for the storm to pass. I, then, began to see how my mother was emotionally battered and abused by my sister. She might not think it was abuse, but I knew the effect was abusive. I felt so outraged that here and for God knows how long, my mother had been basically putting up with abuse. It was doubly difficult as I know that she had thought she was free of that when she divorced my father.

I told my sister Elsa my impression and that clicked the light switch for her as well. My sister Elsa had far many more memories of my father’s rage as she had known him when he was younger. They were together more, and he went into temper rages a lot. My parents were separated and apart much of my upbringing, so I do not have the same memories of the pattern of abuse and fear from his rage and temper. But my sister stopped dead in her tracks when I mentioned Jenny had become our father. She knew immediately, it was true. She also started to see a pattern of abuse. I later told my brother Dik of my impression; he agreed it was elder abuse. We all have such vivid memories of the violence from Jenny; my eldest siblings have such vivid abuse of the violence from my father. Rage is not something that is easily forgotten; rage burns deep impressions and created automatic fear responses in children.

As I drove my mom to my eldest sister’s I began a journey in my mind of things I heard but did not register as a pattern of this kind of abuse. There were many episodes in the prior 8 years (the time when Jenny had become my mother’s regular co-dependent companion), for which, I had not taken in and thought about....but there numerous episodes. I felt instantaneous guilt because I could do nothing to rectify this situation or change it. My mother was not going to put a boundary up to stop Jenny, for Jenny was, to my mother, completely her dependent and her creation. It was a remarkably sad realization.

#siblings #drama family #helpless #illness

A moment of feeling so optimistic

So after we learned that my mother did not have pancreatic cancer, I felt somewhat hopeful. She had been through many health scares as she aged, but always seemed to get better and adapt to whatever ailed her. I felt now that cancer was ruled out, all would start to mend.

That night back at my sister’s home, she and I were talking about the whole relationship challenges of the two sisters. I explained that I could not handle so much of the projection and fighting. I told my sister that I would make a trip down now every three weeks to check on my mom. She said that would be helpful as we, both, now did not trust our sister Jenny with our Mom’s health. It wasn’t that Jenny was out to hurt my mother, but it was that she could not manage care well. She was a terrible caregiver of this nature. She preferred to drive my mom around and get free meals and such from her, but changing diapers, helping turn her while she slept, etc.,Jenny is not the person you want to help at all.

The next morning, I was going to go to Pilates and then on to see my mom, when my sister-in-law called me to tell her grandfather had died. She was upset. It was odd because neither she nor her mom expected it at all. Thankfully my sister-in-law was in VA with her children and my brother so they could immediately leave Arlington and head down to Charlottesville for the funereal and to be with her parents. She was upset because she did not bring clothes for the boys to wear, etc. I wrote her a check for $1000.00. I was struggling a bit with finances but knew I had new clients about to start in a few weeks so I decided it was the right thing to do. She thanked me. Then she, my brother, and their two sons set off to go to Charlottesville.

My mom was doing better; she had terrible cramping from the endoscopy, but she was doing ok. My eldest brother was going to go back to his home in FL, as he had test to see how he was doing since his transplant. He looked a million times better. He had gained weight back and seemed to be doing well. Later at the end of the summer, he was due to have an annual assessment to see how well the transplant took and so forth. Before his transplant he had a bit of hypochondria, but since his transplant he was crazy scared about life. The anti-rejection drugs suppress immunology, do he could pick up a bug and get quite ill very fast. He was very cautious as his son was getting married at the end of the summer, and this was something all were looking forward to except my brother and his wife. They were having such difficulty with their soon-to-be daughter-in-law. He was irritated beyond measure as he felt he was being milked for cash for the wedding and had no say. I do not know the entire circumstances but I know there was ill will on both sides of that coin.

My mother, sisters and I all sort of chuckled about it, as it was almost like payback for his own wedding! We had such a nightmare with that wedding, and my mother caved as she did not want to unsettle the waters, but to us, she complained bitterly about the whole event. It was truly a sad event as it snowed and the whole thing was seriously impacted by the storm. We also did not know there was no food served, which my mother was too embarrassed to tell her friends, so it was an episode of infamy to say the least. We all found the irony of what he was going through somewhat amusing. Oh how the universe has its own form of justice!

My eldest sister and my sister Jenny arrived around lunch time at my mother’s. I was there and Jenny wanted to know who was going to stay with my mother since Christian and Susan had left, and Dik was gone. Jenny was taking full advantage of family leave from her job and not working much that week. She had a tantrum about being the one....this from a woman who was getting paid to care for her mother. I said, I will stay. I had to go back to my eldest sister’s to get my stuff,, and then I stayed.

My eldest sister Elsa went through my mother’s routine, her medications, etc. She stayed with me and mom until we got mom into bed. I was feeling horrible as well, because my sinus infection was back, and I had massive headaches and breathing issues. I went to sleep in my mom’s guest room and she in her room. I was scared for her, so I woke up twice to check on her, she had moved over in bed but seemed to be okay. I was instructed to fill a little paper cup with the meds she took during the night or early AM to help with her pain. She cried out about 6 AM, but I did not hear her. She wanted me to sleep in the other room because she snored. She had twin beds in her own room as she loved to have company and have plenty of room for people to stay.

I got up around 9 and I saw my mom using her walker to go to the bathroom. She said good morning and blew me a kiss. I got up, tried to get something going for her to eat. I went back to help her dress and get ready to greet the day. Her care worker showed up at 9:30 AM. My mom, when vulnerable, was always so sweet and easy going. I felt strongly that I would spend the time necessary to ensure she was cared for well. Between my two sisters and I, and the care worker, we shared to load to make sure she always had someone to sleep in her home with her. She had family there every day. I had very positive feelings we would manage this health crises.

#mommy #end of life #the caretaker #love

And there we are with her on that evening to celebrate Elsa’s birthday and the boys graduations from college and high school. My brother Chris looking terrifying as he was in the hospital just the night before-as people remarked “barely recognizable”, as he was all so jaundiced and swollen.

Wait, it isn’t cancer!

So after the night of drama with Christian, we then had the next day to take my mom for her endoscopy. I drove in to be with her, and I drove with her and my sister Jenny to Georgetown Hospital.

I helped her out of the car, got a wheelchair and took her to the registration area. Once her paperwork was done, we took her to a waiting area. Then we were instructed to get her undressed in a patient intake room and ready to be taken in for the procedure.

She was sent in, and we waited outside. My eldest sister arrived as we all wanted to know what the outcome was. We were expecting some bad news. While we were waiting my sisters had some kind of tiff, again. Then they both stopped talking with me sitting in between the two of them.

After an hour or so, the MD came out and said, “stones.” He then went on to say that she did not have a mass in her pancreas at all. She had bile stones in her duct. They had put a stent in during her previous hospital stay as the duct was so infected they needed it to stay open. So they left the stent in the duct, as there were now stones, and they feared the bile duct would be clogged again.

This is called Cholangitis; my mother had severe Cholangitis, which is blocking and infection of the bile duct. It is possible to die from this, and it is very painful. They had removed some stones during the endoscopy but could not get to them all. They said that was what was causing her pain. And they said, she would have to come back for another endoscopy in about six weeks to get more stones removed. My mother’s age and general health status precluded any thoughts of major surgery. So endoscopically was the only logical and safe plan to remove these stones.

There was a collective sigh of relief, but my eldest sister was not happy with the MD, the whole process, my mother’s primary care MD, etc. She left as she had to do something. My eldest sister almost seemed annoyed that it was not pancreatic cancer, as I feel she thought she knew. My eldest sister wanted my mother to get another opinion; my eldest sister also felt my mother’s primary was too old and not competent to make such judgement. She wanted my mother to heed her advice over her primary. I was inclined to side with my eldest sister on this issue as well, as I felt my mother’s primary, who was in her 70′s and a cardiologist/internist was not so up on the latest.

My other sister and I went in to see my Mom and get her ready to leave. Her Gastroenterologist was with her and he was quite nice about her. He said she was frail and explained everything to her. She was not happy with the idea that she must come back for more of these procedures, but she felt that at least there was a diagnosis and a prognosis.

My mother was a doctor’s daughter, and I truly believe, children of MDs have a strange belief about MDs. My mother always treated her MDs as if they were family, she invited them to parties, got to know all about them, etc. She gave a lot of trust to them, which neither my eldest sister nor I are so quick to do. I have never found MDs to be the gods or even the authority figures so many believe...mostly because I have had too many experiences that needed a lot more effort on my part to heal than that of an MD or a drug. I treat them as people with knowledge and skill but not the decision makers over my health, as I truly believe my health is my responsibility.

So we left to go back to my mom’s home. We were going to have a little graduation and birthday event with my sister’s son, my brother’s son, and all of us. My mother loved parties, especially when they were in her home. My mom always wanted one her hats to be “the hostess with the mostest.”

By early evening, my sister’s two sons who were there, and her daugther-in-law at the time, my brother Chris and his family, my eldest sister, my eldest sister’s husband, my eldest brother, my other sister, my mother and I had a great fun dinner of both Middle Eastern and Japanese food. We had a nice birthday and graduation cakes and tarts to celebrate. We had gifts. My mother was in heaven. I sat next to her at her dining room table. My mom loved chatting and seeing everyone there. She enjoyed it all.

After we all got together with her in her living room and took lots of pictures. This was the last time my mother got to see all her children together with her. It was a moment without ire and resentment. I am glad she had that feeling of importance and care to start the summer of her passing on. A summer that was, to me, both interminable and yet, far too short.

#sweet mom #family #siblings #health #home

My sister-in-law Susan and my brother Chris in August 2008 at my nephew Drew’s wedding in Asheville NC

#siblings #big brother #sister in law

So it wasn’t my mom’s health that terrified me after all....

The next morning, my eldest sister Elsa called my eldest brother, who was at my mother’s house. She was talking to him about my other brother, the one I thought was going to die. Elsa and I were talking about it after she hung up; I told her it was crazy. I did not trust the VA system or how he was being treated. I was convinced that in the Nation’s Capitol the medical care would be better. She then said, “Let’s take him to the Emergency Room.” I agreed.

So we called my brother Dik who relayed the information to Christian’s wife Susan that we were driving in and going to take him to the VA ER in DC at the whole Washington Hospital Center complex. The National Children’s Hospital is there as is the Washington Veteran’s Hospital Center. It has an ER. Many VA Hospitals do not have an ER.

So we drove in, and my brother Dik, helped bring Chris out and put him into my sister’s car. She, I, my brother’s wife Susan, and Chris all drove to the complex. We took him in, and they found his information to allow him to be seen. Then we waited. We waited for a nurse to come and do an intake process and take his vitals.

After maybe 45 minutes, we went to an outer office with equipment, where the nurse took his vitals. She asked him questions. He answered his own age incorrectly. She looked at the white of his eyes and asked him, “Sir, do you have liver disease?” He answered affirmatively. His eye whites are yellow. His skin is always dark. He looks like he permanently tans, but that is his liver failure.

Then he was taken in a wheelchair to the ER department. I will tell you, if you have a chance, I think every single American should actually go into a VA Hospital ER and see it. It was horrific. There weren’t enough beds for people, so our Vets, sick and in need of care, were all lined up in wheel chairs blocking every single space of floor in the ER room. Many were without blankets, hunched over, and in flimsy gowns. Most had their shoes missing, in a place where there is goodness knows, how many germs! All waiting for something.

They took my brother’s shirt. He was sitting in a wheelchair with no blanket, no shirt, and left to freeze. He asked for a sheet. He was shivering. My sister-in-law, and I waited for a doctor. Finally one came to ask about his condition. He, my sister-in-law, and I all contributed to what we had experienced and witnessed. His rage, erratic behavior, his memory issues, his constant edema, and his lethargy were all we mentioned. The female MD said she was trying to get access to his records in his home location. Apparently the VA system is not centralized We were told the most ridiculous information because he wasn’t part of that VA Hospital, he could not be admitted or seen by an MD, but would have to go home and be put a waiting list. The first available appointment would be at least 30 days.

He was in the process of going monthly for a two hour drive to Oklahoma to see his specialist in the VA Hospital there....every month he drove there and back. So while we were in DC’s Hospital, there, they decided that they would do his blood work, run an CT Scan, etc. But we had to wait. A nurse said only one of us could be with him at a time. She would let us know when we could sit with him.

Both my sister-in-law and I misunderstood her instructions. We both thought we had to go to the waiting room and wait for her to tell us when we could go in to be with him. What she meant was that only one of the three of us could sit with him at a time, so when one needed a break, another could go in. So his wife and I went to join my sister in the waiting room and wait. We were all sitting there, and we left him all alone sitting in the chair, and cold. Finally, when they needed my sister-in-law to talk to another MD, she went in. She sat with him until she needed to go out. We switched off between all of us. He was wheeled places and so forth. We were there from 1 PM in the afternoon until 11 PM!!!

We tried to find something to eat about 8:30 PM, but there was nothing open to get food. There was this concession stand in the lobby, which my sister-in-law discovered when she went with him to his CT Scan. We got seriously sad grilled Caesar chicken salad with a slice of bread. My sister got a fruit salad and cookies. I took the food into him. He had no appetite, but then decided to have a piece of chicken folded over in one slice of bread. He was so alone.

There were so many people with no one there for them. It was tragic. It broke my heart to see these soldiers in such a horrible state and place. ER is never fun, but this was something so atrocious...it was like we were living centuries ago. Chris was freezing cold. I asked him why they took his shirt, he said he did not know where it was; I asked a nurse if I could find a blanket for him. She said she would look. My goodness, why wasn’t this automatic for these poor, sick people? I got an impression of the whole VA system, and it was not good. I was sure if he were to stay with this system, he would die.

Finally, at 10:30 PM, the MD said that the test results and records from his OK MD were there and would talk to us. We were told he would be discharged, and we could go home. So my eldest sister went out to get the car to bring around. She needed O2 to walk, and she was worried her canister would run out before long, so it was good we were leaving.

My sister-in-law and I went to collect my brother and speak to the MD. I am always amazed at how passive my sister-in-law is with MDs, I always have a million questions. She was just taking in the information of the stupid system to understand his health. The MD surmised his brain had ammonia built up, and he needed to take the Lactulose. The doctor asked how long he would be in the area, and gave him enough to last him through. She admonished him for not being so diligent with taking it.

I think my sister-in-law was taking it all in and realizing how much her passive behavior was not okay. The records did not indicate that he would need any attention at that moment. His tests were the same as the ones the MD had gotten from his OK MD, so she thought no further deterioration had happened from when his regular MD had seen him. I thought the whole experience was a nightmare and served little value other than a wake-up call to my sister-in-law, and some information for my eldest sister and I to know to understand more of what he was going through.

While we were in the waiting room, we spoke to my brother’s wife and resounded that allowing him to drive was out of the question. He was not capable of driving a car, let alone, only by himself to OK 2 hours there and back. She soon came to realize that it was probably a fact that he was not capable of a lot at this moment. My eldest sister and I thought the experimental drugs he was on were killing him. We both wanted him out of the study. But that was not our choice to make. He liked his MD in Oklahoma and believed the drug was going to somehow cure him enough to qualify him to be a candidate for a liver transplant. He would never be considered so long as Hepatitis C was in his blood stream.

I came to Virginia to visit with mom. We both came to share time. When she became ill, I was so intent to visit with him for her to see us together because I thought my mom was dying, but I found my brother in such a desperate condition, I thought I would lose him sooner. I also walked away with nothing but disgust about how badly our Vets are treated. How on earth politicians allow such things to happen! Spending all our human emotional capital for sympathy for Syrian refugees while letting our own servicemen to be cast aside, is, quite frankly, reprehensible.

I feel empathy for all victims, but our service men and women deserve far better. I encourage all to go see a VA ER first hand. You might suddenly feel a need to make better choices with your votes for Senators. Now when the Senate votes repeatedly to cut the Vet’s benefits, I make a mental note and make sure that whoever voted for these cuts is never getting my vote, ever. This story is not about politics, but that one experience was so bitter and awful, I feel an obligation to hold politicians accountable.

#siblings veterans healthcrises VAsystem

My nephew Alex (Dik’s son), My mom, Me, My sister Jenny, My niece Joanna (Dik’s daughter) in my mom’s home in Arlington VA. She sold the home I had grown up in, in DC, about 13 years prior and moved to a one floor home in Arlington, as she was having difficulty with stairs and such then. Good move as she declined in ability, the one floor was a blessing.

#family #mom

Feeling dubious all was so bad....

So the next day, I woke up and went to Pilates in Tysons Corners. It was about a 50 minute drive from my sister’s to my mom’s. Northern Virginia is a traffic nightmare most of the time. The intersections at Tysons Corners and Seven Corners are extraordinarily traffic laden. But after Pilates I set off to see my Mom.

When I arrived at my mom’s house, I was astonished by my brother Chris’s appearance. He was swollen from head to toe. The edema was extraordinary. He had not had a hair cut in ages. He looked awful. My mother was resting, but she looked great in comparison. As she had been so ill, she was losing weight rapidly. She had been losing weight on purpose for a couple of years, though. After our birthday celebration in NYC, I saw her about 5 months later on a drive through to see her dear lifelong friend in Massachusetts. She had lost about 40 pounds from when I saw her last. She was doing a slim fast and soup diet. She was not mobile so exercise wasn’t happening, but this odd sort of liquid diet was how she was doing it. The constant use of dairy had caused her pancreatitis to start. But you could not tell her what she did not want to her....so instead, she took medication and kept on doing her slim fast thing.

Each New Year she had seemed to trim off about 10 or 15 more pounds, but now she was about 30 pound less than New Year’s, and she was walking! She was using a walker, but she was walking. She could wear pants, which she adored. She loved being thinner and mobile.

My brother was angry and brusque, when he spoke he did not make coherent sentences. There was dramatic fighting between my sister Jenny and him. My mother was resting on her couch, and he was resting on her recliner. I was so shocked about my brother. I looked at his wife and son, and then I said I would let them rest. I took my sister-in-law and her eldest son, the one who had graduated out to Seven Corners. We looked for a place we could just sit and talk and have a lunch of some sort. There had been many places there in the past, but now there was really none. There was a sort of Shakey’s kind of place that served German food and beer, I think. I truly do not recall. We went in and there was virtually nothing to eat for me. We got a vegetable appetizer tray and some drinks. I asked what on earth had happened to my brother.

As the treatments he was on continued, he was starting to lose a lot of mental acuity. Ammonia was building in his brain from the liver failure, and he was to take something called Lactulose to move his bowels to remove the ammonia. He did not like to take it because it worked fast and the after effects of it were uncomfortable. But without it, the mental issues and the swelling exacerbated. His reasoning was so faulty, and he was argumentative. He had caused a huge scene at his son’s graduation; the family almost did not make it. He made his mother-in-law cry. He had insisted on driving a certain way to my mother’s and they got lost, the car had problems, etc. It was a total train wreck. I was convinced that the medical treatments were not good in Arkansas where he lived and that there was something completely wrong with what was happening. I was sure he was going to die.

I stayed for a bit to be with my mom, but by that time the care worker had gone and my sister Jenny was there making a big stink. Christian and I tried to talk to my mother but my sister Jenny kept trying to talk over my mother and tell us what my mother was thinking. It was a travesty.

I left to go back to my sister’s house, when I got there, I told her how horrible my brother Chris looked. I told her it was terrifying. I told her how I had taken his wife and son out, and they told me the stories of what was going on with him. She told me, my other brother Dik was arriving and staying with his friend in DC. We went out to dinner. We talked about my mom, my eldest sister and I were going to the hospital with her when she had her next endoscopy that week. We talked about what we were supposed to do before hand, and how to approach the MDs with very specific questions. We all had questions, and none of us trusted what we were hearing from Jenny. My mother’s own account was not in sync with Jenny’s. We wanted our own questions answered so we could figure out how to best support our Mom.

My eldest sister had been in my mother’s office looking for information about her insurance. She had a long term care policy. My eldest sister was trying to get it to kick in. She was on the phone daily dealing with them. Based on what we went through, I advise every single person to NOT buy these as I think they are huge ripoffs. The premiums are astoundingly high. The max care $$ per day is $125, and there is a 91 day waiting period before they consider pay out. My mother invested over 125K in premiums for this policy and basically, she threw her money out the window. My sister had constant arguments as to the waiting period time frame. Agreement as to when it started and stopped, etc. My mother never used one cent. Because of the constant arguments, my mother according to the company’s calculations died at day 89. What a horror show the whole thing was, so my words of wisdom, DO NOT BUY LONG TERM CARE POLICIES!!!!!! They cover little, and they pretty much don’t pay out. The cost of care for a worker is not cheap. It was more than $125 a day.

In addition to looking through my mother’s stuff, my sister found my mother’s will. She sent us all, save Jenny, copies of it. It was, perhaps, the worst thing we had ever read. My mother had written numerous wills in her lifetime; we knew how she wrote and all pretty much contained similar stuff. This will was nothing like her previous. And unlike her previous wills, where people she knew, friends and so forth, were witnesses, whom we all knew, this will was witnessed by my sister Jenny’s friends.

Jenny was name executor. Jenny also was to inherit a full third of everything. Jenny was also to have first pick of lots of things. There were specific bequests to each child of possessions she held dear, but the wording was not my mother’s. She completely wrote off my brother-in-law, but did mention her two daughter-in-laws. My mother also did not mention bequests to her grandchildren, which prior wills all had, but only a cash pay out. The whole thing was orchestrated, of this, we were all convinced. Something really astounding was that my mother deducted the amounts she had loaned my eldest sister and my brother Chris from her payouts.

This was shocking; this was definitely Jenny’s hand. My mother was an attorney. Although both my parents were, and both would often echo, “you see when I die,” or “ I will leave it to you in my will,” or “I’ll show you when I am dead.” I hated this reality as this type of mantra I felt was controlling from the grave. My mother would often counsel client’s not to do such things in wills. So that she did, I am 100% of the belief was not her choice, but rather a coerced one by my sister Jenny.

My mother constantly complained about both of my siblings asking her for money, but she always ponied up something. It was an odd love/hate thing going on; my mother loved the power she had by doing such, but she hated that they believed the well would never run dry. During my lifetime, I really needed money several times; I only asked my mother for help once after graduate school. She responded she had to give so much money to those siblings, she did not have any. She did sell some stock and give me $2500 at one point. I had $138K in grad school debt, but I hustled. I did anything to build my business. I paid off all that debt within five years.

My mother supported me in ways that she could. I always think my mom had the whole WWII mentality about thrift. She paid for furniture she had gotten from my grandmother, on my father’s side’s estate, to be recovered to help me settle in my first apartment on my own. She gifted a lot; her gifts were often not the best stuff, but she tried. She would see if I needed things, mostly kitchen stuff and would offer to purchase something for me. Cash was not something she gave to me. When I was first out of college and had to move North to find employment, my mother had used money as a way to coerce me back to DC. She gave my brother money all the time, but with me, she told me could not help me unless I gave up my life in CT and moved in with her. I knew I could never do that because to do so would have ruined my life.

I always knew, as did my brother Dik, there would never ever be support of that kind from our family of origin. My elder sisters in their sixties were constantly reliant on my mother for money. My brother Chris, during his entire adult like, had maybe 4 years without asking her for money. When my mom had come to NYC for my birthday, she was bitter about it. She told me while we were having lunch how much she hated giving them money. That is when she told me that they had too much of their father in them. I told her to stop giving them money; I told her if she was so pissed off, then fine, leave them less in her will. My sister Jenny was present during this conversation and loving every minute of it. My sisters’ bad blood relationship was something we all knew of and dealt with, but when one would hear bad stuff about the other, it was always with a bit of relish. My sister Jenny took that bee and stuck in her bonnet and used it! She badgered my mother about it. So when she redesigned my mother’s will not only did she make them get less, but she also ensured that she would get more.

My sister Jenny, truly a quite mean spirited person when in her raging, I do not dismiss that she is capable of anything of the worst nature. She seems capable of rationalizing atrocious behavior as just. There have been many immoral and some illegal things that she had done over the years. We have had a long history of actions she has done where she gets away with it, and feels that she has right, not one ounce of guilt about it. Petty things such as getting replacement gifts for deliveries she claims were broken or rotted but were not, stealing items such as food from her employer, etc. She also is quite calculating when she wants to be, and since she had the most access to my mother, she took advantage of a truly sad and vulnerable time for my mom, who was clearly not doing well after my brother Dik’s transplant. Life was really very fragile for her, and then my eldest sister did something which caused my sister Jenny and my mother to start a rampage, in the fall of 2011, which coincided with the time after my brother’s transplant and before he had tried to make amends for treating her so insensitively.

Elsa was in dire financial straits. We had all gotten notices from her creditors. She was defaulting on loan payments. But her son had not finished college and needed $4K for his final semester. My sister had no money. She had terrible credit and could not borrow anything. She refused to sell any properties. Her mother-in-law had died a few years earlier, and there was no money to be had on that side. Although her son had money he had inherited and stock, she did not want him to use it. He could borrow on a student loan, but apparently the terms of the loan required a co-signer.

Elsa could not co-sign as she was in default on other loans, so she sent her son to ask his Mor-mor to do it My mother was a strong, intelligent woman. She read the terms of the loan. She thought the interest was ridiculous. She told me, she felt my sister’s youngest son was like his mother and would not have the money to pay back the loan, and she would be the one left holding the bill, ultimately. She said it was a terrible loan and so she gave him the cash instead, but not without a huge amount of nasty comments by my sister Jenny. Jenny went on a rampage about it; Jenny complained to me about it. Jenny loved an opportunity to trash Elsa. Jenny had started making inventory about my mother’s things and accounts in her mind. Jenny was clear about how she needed cash to retire and live. She was determined to be taken care of for life as she despised her siblings in many ways and was co-dependent on my mother. She had been talking of moving to Norfolk where my nephew was stationed. She had a plan.

So when the opportunity of my mother sitting in a bit of ire over the $4k she paid out for her grandson’s college, Jenny began the process of fueling that fire. She got my mother to write a will, with her input, almost a week after that $4k gift. The will was executed the same month my mother gave the money to Peter. If my mother had had a lawyer friend read and talk to her prior, my mother would have gotten advice that she gave many of her own clients, do not write your will with this kind of emotional ire going on. Give it a rest and come back to it. Jenny knew exactly how to manipulate the situation in her favor. It is truly sad to know your siblings are people you do not respect, but it is also far worse to keep trying to defend and participate with someone who can be so toxic. Little did I know how toxic she would become during my mother’s end of life months. I learned enough to not put a red flag in front of a raging bull, but when that bull is also one with mental instability and faulty processing, you are doomed. The erratic behavior is impossible to dodge.

#family siblingstuff meangirls drama

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