Final Arrangements

On Monday August 25, 2014 I left work early and drove to Muncie to pick up my Mom. We were going to go to a funeral home to make her final arrangements or "pre-planning" I guess is the nicer term. I had made this appointment myself for her, this was also not at the top of her list of things to do.

When I was younger, probably 11 or 12 or so I distinctly remember going to a funeral home with my Mom and Grandma in South Bend to make her final arrangements. I remember sitting on a couch in an office while they talked over things and what things would happen at Grandma's funeral. My Grandma was healthy at the time, but this was something she wanted to get done. I don't have any recollection of what they discussed but I remember looking at caskets and dresses. The dresses part I am confused by, did they have dresses you could select to be buried in? Wouldn't she wear her own clothes? I can't remember. However, I do remember that even though this was such a solemn topic, none of us were sad talking about these things. She was healthy, her death was not impending. In fact, she did not die until I was 18. She was diagnosed with metastatic liver cancer in February 2001 and died that April. My family gets sick and dies quickly which I guess could be considered a blessing and curse. I remember when I was in 3rd grade and my Mom got the call while we were eating dinner from her father that he had esophageal cancer. I remember her sinking to the floor in tears, an image I will never forget. He died quickly as well.

My Mom was always proud of me for coming along on that trip and not being scared about being in a funeral home and the topic they were discussing. She thought it was very wise of her mother to make her arrangements so far ahead of time. However, when death is impending it can become very hard to make these decisions, decisions that are real, that will affect you almost certainly in the near future. She was not too keen on the appointment for final arrangements, but I used the experience we had with Grandma to convince her to do it. Wasn't it nice of Grandma to pre-plan things for you? Didn't it minimize stress for you and your brothers when she died? She agreed that yes it did.

I remember that when I went to pick her up her friend Diane was at her apartment. It was her designated day to check in on Mom. Mom told her what we were doing and that she was hesitant to go but she knew it was the right thing to do. I remember her friend said that that was something her and her husband needed to do themselves, but hadn't gotten around to it. Diane's husband died unexpectedly in November two months after Mom had passed. My mind wandered back to that conversation when I heard the news. Life is short, life is unexpected. People are here, they are well, and then they are gone.

I had made the appointment at the funeral home after Mom had been released from the hospital. The appointment had to be postponed a bit because the woman who did the arrangements was going to be on vacation for two weeks, so I booked the appointment the Monday she got back. She said she could do any time so I picked 6 PM which would give me time to get off work and drive to Muncie. As we pulled into the parking lot I noticed it was empty and I had a bad feeling. We pulled up to the door and I got out, the door was locked. I drove around to a door around back and it was locked too. I knocked, no one answered. I called the funeral home and got the after hours person who put me through to the woman I had booked the appointment with. She called me back and said she did not have any appointment on her calendar for the day. She had no appointments listed at all for a Patricia Sexton. I told her I definitely made an appointment and made sure to schedule it after her vacation. I'd hoped that that personal bit would make her realize she had made a mistake because how could I have known that information if I had not spoken with her? It did not phase her and she did not apologize. She was nice enough, she said we could schedule it again. So we decided for 10 AM on Wednesday. Mom said she would be okay by herself, the woman would come to her apartment. So we left but very unimpressed. This was not a meeting I wanted to miss. It was difficult enough to encourage Mom to go and now she would have to do it herself. It seemed kind of funny that our appointment for "pre-planning" had been erroneously not scheduled. This did not bode well for our confidence in them to take care of Mom's arrangements when she passed and to carry out her wishes.

On Wednesday morning I texted Mom that I hoped everything went ok and that I wish I could've been there with her. She responded that she called and canceled the appointment. A while later I received a call from the woman saying no one was answering at Mom's apartment. Mom wouldn't answer the door. I said she had called and canceled the appointment but the woman was unaware of this. I said we would reschedule for another time. One of the funeral home directors called later to talk to me and find out what happened.  He was very apologetic. I think there was confusion because there is a funeral home and then there is the building for the cemetery, both buildings have very similar names but are different businesses. He said maybe we had gone to the wrong building on Monday. Maybe...but the woman still wasn't at either building.

Mom had made a list of her wishes on a piece of notebook paper with the funeral home listed at the bottom that I found the week she was dying. She had crossed off the name of the funeral home and written in red ink "Find somewhere else!" And so we did.

Graison's Birthday

Today is my nephew Graison's 7th birthday. He had a birthday party today and one year ago today he did as well celebrating his 6th birthday. My Mom has 7 grandchildren (6 living) and Graison is the oldest, the first grandchild. I remember the day he was born vividly as I stupidly at that time decided to stay in the waiting room all night to "support" Ryan and Carly. Her water had broken on the 22nd while I was at work. After work I went to my work wedding shower as I was going to get married in two weeks. I stayed up all night in that waiting room so to not miss the arrival of my first nephew. He arrived I believe sometime around 9 AM the morning of the 23rd. I mean I could've gone home the night before, had a decent night's sleep and showered and grabbed breakfast and still made it in time for Graison's birth. But no, I stayed up all night in that waiting room, peeking in only once on Ryan and Carly who were asleep. Sweet Carly had Graison on August 23 and stood up for me as my matron of honor on September 6, 2008. I'm sorry Carly, I don't know what I was thinking, but you didn't complain once.

A year ago today, Spencer, Amelia, Lydia and I traveled to Muncie and we picked my Mom up for Graison's birthday party. It was a Teenage Mutant Ninja Turtle theme. It was my first weekend back from maternity leave and I was on call. Unfortunately call was heavy and I remember being called 16 times while I was at the party. I didn't get to socialize much, but I was able to take a few pictures.

The last picture I have of Mom and Lydia

Mom was feeling pretty well, she looked good. She would wander off without her walker sometimes and without saying a word I would just bring it and sit it by her hoping she would use it. 

I bought clothes for Graison from Mom and I. I hated to be the lame aunt but he has an abundance of toys. I picked out a card for Mom to give him. It wasn't cutesy. I knew it would the last birthday of Graison's she was at so I picked a meaningful one. I don't remember what it said but she liked it and wrote her own message in it as well. My hope was that it would be saved and he would have one last card from his Mams. 

I'm so glad Mom was here for 6 years of Graison's life. More than any of the other grandchildren, she was able to be in his life consistently, watching him once weekly for a while and taking him for occasional weekends. She was able to see one of her grandchildren start kindergarten. I hope, from the bottom of my heart, that Graison will remember her. 

Dear Mom: On My Birthday Without You

Dear Mom,

Today was my birthday, but you know that. Can you believe that 33 years ago you were in the hospital holding me recovering from your csection? It surely doesn't seem that long ago.

It was my first birthday without you and it was much much harder than I expected. I could not be happy without you. You always made my birthday a big deal and without you it somehow seemed meaningless.

I remember last year you, me, Spencer and Spencer's family got together the day before and we went out to eat at Outback in Muncie. I was very anxious because I had to return to work on the 20th. My maternity leave was over, what a whirlwind it had been. Now I needed to go back to work and I had to rely on your friends to take care of you Monday through Friday. That made me feel sick Mom, I wanted to be there for you, but I knew you were in good hands.

I don't remember why we didn't get together on my actual birthday last year, all I remember is that I had to go to the doctor that morning and I was very very tired. Why didn't I spend the day with you? I knew it would be the last birthday of mine with you. I had a reason, but I just can't remember. I can't think of what reason could've justified not spending the day with you. You texted me at 8:43 AM that morning. That was really early for you in those days. I know you must've made a special effort to get that text out early.

Mom, I cannot thank you enough for always making our birthdays a big deal. I know a lot of kids don't get that. We would get to sleep with "birthday bear" the night before and would awake to banners and signs. We would get a special dinner, presents, and cake. I remember that you always took the day off for my birthday. I remember going to parks and miniature golf and manicures and parties. You truly made birthdays our day. I remember my first year at Purdue you guys moved me in the week before my birthday for Boiler Gold Rush, but then you made sure to come back the next weekend to celebrate on my birthday.

It seems selfish of me to say, but I know no one is going to make my birthday a big deal like you did. I know I was lucky to have 32 years where my birthday was a big deal. The only party I had today was a pity party, haha.

Today, it just wasn't the same Mom....what I would've given to receive a text from you. I got several texts and Facebook messages from family and friends, but Aunt Pat, she called me. She called me at the crack of dawn as usual to sing me happy birthday. I let it go to voicemail as I usually do and slept a little more. She called back in the evening. I answered and we talked awhile. I told her I was fine, but she knew I was not. She told me she knew today would be very hard for me. I couldn't get out the words that yes it was.

I wore the ring I bought you for your birthday in 2007. The ring with the butterflies I told you represented us. I'd hoped to have this ring one day when you passed away. I'm wearing this ring a lot sooner than I thought I would be.

Oh Mom, tomorrow is 11 months since you passed away. How is it even possible? 

You taught me a lot Mom. You taught me that birthdays are always to be celebrated. You taught me that 33 years is still young. You taught that even when it seems like it's not, life is still beautiful.

I miss you.

Love, Danielle

Attorney

On Wednesday August 13, 2014 I took my Mom to an elder law attorney. I knew about them from working in geriatrics and I thought they would be the best fit for my Mom's needs. I set this appointment up for her as it wasn't at the top of her "To Do" list. She didn't think she was going to die. She probably thought she could do this later when she felt better. It always amazes me how how quickly in my life my Mom went from parenting me to me parenting her so to speak. I had only moved out of my parents' house eight years ago. The time passed far too quickly.  My Dad and his wife had come into town that weekend for his wife's high school reunion.  He had just gotten into town the prior Saturday and after I had said goodbye to Aunt Pat I had the urge to try to find him. I drove around Muncie looking for his car hoping to surprise him, hoping to connect with a parent that was still able to act as a parent to me. I needed that. I found them and hugged him and introduced them to Lydia. I did not tell my Mom he was in town, that was stress no one needed.

The last will my Mom and Dad had put together was when my brothers and I were little children and she needed a new one. More importantly I wanted her to create a living will and designate powers of attorney and health care representatives. These are actually very important documents for anyone to have, Spencer and I need to set them up ourselves. It is important for people to designate who they want to make decisions for them if they are unable to do so. It doesn't automatically default to your spouse, children, parent, you have to elect them. If you don't and you are unable to make decisions for yourself or you pass your family will likely be on the difficult road of navigating the court system. You always think you have more time until you don't have time. My Mom didn't have more time.

I had gone to Muncie the night before to pick her up and drive her back to Noblesville. I had picked an attorney close to me in case I was able to move her in with me the attorney would be easily accessible for future needs. This turned out late to be a poor decision on my part. I should've picked someone in Muncie, but I didn't know what the future would bring.

We ate at MCL in Muncie Mall before we headed to Noblesville. She ate the first full meal in over a month. Her mouth was finally healing.

Before the attorney appointment my Mom spent some time playing with Amelia. 

This is the last photo I have of Amelia and my Mom together. 

We arrived to the attorney's office and I put my Mom's walker to the side and helped my Mom up the steps. I thought it odd an elder law attorney's office would have steps to the entrance. 

We went over with the attorney what my Mom needed done. My Mom did not have much to her estate, there really wasn't any. My Mom would leave it up to us to divide what was left of her worldly possessions. To my surprise and relief my Mom had already set up quite a few things. She had already changed the beneficiaries on all of her insurance policies and 401k to myself or my brother's and I. I was elected as her power of attorney and her health care representative with my brothers as back up. For whatever reason my Mom needed to list her living grandchildren. She named them, "Graison, Lucas, Liam, Noelle, Amelia, and Lydia." The attorney paused and had her relist them. She remarked at what beautiful names they were. 

The attorney brought up assisted living facilities which would truly have been the best living place for my Mom. She couldn't afford them. The attorney suggested applying for Medicaid. My Mom looked a little taken aback. I reassured her that Medicaid was not just for "poor" people especially not when it comes to the older adult population. The types of facilities many older adults require are too expensive for even the middle class to afford. Working in theses facilities I knew the price tag was somewhere from $5,000-10,000 a month. It seems odd to say that living in a nursing home is truly a luxury not afforded to many, but without Medicaid, it becomes nearly impossible. This is very very sad. I wish we had a way to take care of our elderly population better. Even more difficult was the fact that I knew very few assisted living facilities accepted Medicaid. I knew of a handful in Marion County, I didn't know of any in Muncie. We still decided to go ahead and have her draw up that paperwork. 

We felt satisfied when we left and I felt some relief. The afternoon was not cheap, my Mom had written them a check for $1500, but we felt it was worth it. Afterward we looked for a restaurant to eat at, we ended up at Fazoli's. I don't think I've been there since. 

We were scheduled to return in about 3 weeks after the paperwork had been drawn up so she could sign everything. We never made it back to that appointment. It was too late. 

Aunt Pat Goes Home

On Sunday August 10, 2014, Aunt Pat went home. Mom was done with chemo and Aunt Pat's sister was getting sick and needed her. Aunt Pat wasn't doing so well herself. She was having difficulty walking and was having excruciating knee pain.

A few days before she left she told me my Mom couldn't live alone. It wasn't safe. She was sleeping for short spurts during the day and staying up most of the night. She said she couldn't sleep but part of me wondered if she was scared to go to sleep at night, maybe scared she wouldn't wake up. One night she had fallen off the toilet onto the bathroom floor. She said she was reaching for her walker, but I have a feeling she had fallen asleep and just fallen off. Aunt Pat had to help her up.

I knew what Aunt Pat had said was true, that she couldn't live alone but I didn't know what to do. Our house was not ideal for her to move into but I still would've gladly had her; however, she protested. She was not moving anywhere, she was fine she said. Although forgetful at times she was still in her right mind. I couldn't drag her from her apartment. She would've fought back. Knowing Mom, I wouldn't have put it past her to call the cops and tell them she'd been kidnapped. She wasn't budging.

Her church friends from Trinity Baptist stepped up though. They devised a schedule so one of them would come each weekday for a few hours. Ryan and I could come on the weekends. I set up a pillbox with a spot for 4 different times a day that I would fill weekly. It wasn't the best remedy but it was something and I don't know what we would've done without her friends. I've said this before that I used to think that my Mom didn't have a lot of friends, but I learned my Mom had the best friends. They took a few photos before Aunt Pat left.

I love that bottom photo of my Mom. I have it cropped of just her and use it as my phone wallpaper. 

Aunt Pat would leave early Sunday morning so I came up on Saturday August 9 to say goodbye to her. I don't remember exactly what we did that afternoon, but I snapped this photo before I left. It's the last photo of my Mom and her best friend together. A friendship of over 40 years. 

Aunt Pat left and another door closed.

I Don't Want Anymore Chemo

On Tuesday August 5, 2014, Lydia and I drove up to Muncie to take Mom to her last radiation treatment and to her oncologist appointments. Lydia had just turned 2 months old. Mom had completed 15 treatments of radiation to the bone metastasis in her spine and pelvis. Most of the treatments had been done while she was in the hospital which was actually quite convenient. Lydia and I waited in a little secondary waiting area while Mom completed her last treatment. It wasn't long at all and then we met with the radiation oncologist. It wasn't her usual one, in fact it was the fourth one she had seen, but they were all very nice, caring individuals. That appointment was rather uneventful and she received her certificate of completion. She would have another appointment in a month to discuss prophylactic brain irradiation as her type of lung cancer frequently travels to the brain.

Every time I see my Mom's name, I just stare at it for awhile. It seems like such a strong name, but of course because she was a strong person. It's hard to believe she's not here anymore. After she died, I received a letter from one of her accounts I'd closed and it read PATRICIA SEXTON--DECEASED. It seemed surreal. I also don't know how many times I've read and reread her death certificate. 

After that appointment she had another appointment with her medical oncologist, Dr. Brown. She had recently returned from vacation and had been gone much of Mom's hospitalization. She came in and we went through the usual pleasantries and we asked about her trip. She then brought up the topic of continuing chemotherapy. Mom had originally been slated to receive 4 rounds of chemo. She had received 2 1/2 before being hospitalized. The tumor had shrunk to the size of an ant, but it was still there. We didn't know all of the progress on the bone metastasis as she'd just finished the radiation. Dr. Brown told Mom that it was up to her if she wanted to continue with chemotherapy, if she wanted to finish the four courses. She said the cancer had shrunk tremendously, but that her body was very weak. I asked Dr. Brown if she continued chemo if there was a chance her chemo would go into remission as her pulmonologist had told me that while no cure was possible, there might be a chance of remission. Remission meaning that for the time, there was no trace of the cancer. Without hesitation Dr. Brown said, "This cancer will never go into remission." 

I didn't want her to do more chemo. It had eaten her up, it had changed her. Aunt Pat and I had talked about it and she'd hoped they wouldn't do anymore chemo either. I had not discussed it with my Mom up to this point as I wasn't sure what the oncologist would have to say. 

I told Dr. Brown that at the end of the month I wanted to take her to St. Joseph, Michigan for Labor Day weekend. My family loves Michigan and for Labor Day weekend we would always go to St. Joe. She loved it there. She had told me that when she died she wanted her ashes spread in Lake Michigan. I knew it would be her last chance to get up there and I really wanted to take her. However, I told Dr. Brown I didn't think it was a good idea for Mom to have any chemo before we went on this trip as I knew it would weaken her further. I wanted her to be able to enjoy herself, to be able to eat without sores in her mouth. 

Dr. Brown told us that if Mom wanted to continue with chemo it was really best that she not put it off 3 weeks, however, she said, "If you want to go to Michigan, you should absolutely go to Michigan. I want you to go to Michigan." She knew it was Mom's last chance.  

Mom was quiet for a few moments before saying, "I think...I think I don't want anymore chemo." She turned to me for affirmation and I nodded. 

On the way home we made one last stop at the bank where she turned her accounts over to me. 

I felt more doors quietly close behind us.