Dear Mom: Missing You

Dear Mom,

It's been over a year now since you passed away. I still haven't written the post about your memorial as well as some follow up posts. All of the sudden, I have great difficulty finding the energy to write blog posts. It is hard to write posts without you alive in them. Hospice stops following a bereaving family after 13 months and I'm past that now. I feel...like I need to...like I should move on. But I feel more sorrow than ever. The blog posts helped to give me purpose and to work through the difficult memories of the summer last year, but now we're past that and I feel empty. I shouldn't feel this way still right? I lost you, I lost my Mom, this is not an unusual loss. I'm a grown woman. Grown women lose their moms, it's a part of life. It's not like I lost my spouse prematurely or I lost a child. Just like your and Dad's divorce two years ago, that loss, just like the loss of you, of a mom, is common. It's ordinary. But Mom, the pain I still feel is extraordinary.

Mom, I just can't believe you're gone. You were just here! You were just here. I stand in my kitchen and I look to the lower cabinet where you crouched down to get out pans to help me cook for Christmas 2013. You were just there. I look to the end of the counter where you always stuck your purse when you came over. It was just there. I sit on the couch in the living room and look over to the chair you sat in a month before Lydia was born as you helped me pick out paint samples for Amelia's big girl room. You were just sitting there. Where did you go? How can you be gone? You were just here. 

Mom, October was a really hard month for me. Work was so hard. There were so many of my patients dying Mom. These were patients who were there for rehab Mom, they were supposed to get better, they were supposed to go home. One Monday morning I came in and three people were dying. I had to call and talk to three families to tell them that despite our best efforts, their mother or father was dying. One son told me his mother used to be such a vivacious woman, that this was not her. I said, I know, I know. Another daughter told me that she didn't want to put her mother through any more aggressive treatment, that she just wanted her to be comfortable. I told her too, I know, I know. I have another patient with ALS who is dying. She is your age, she has a daughter my age. I see the fear in her eyes as she struggles to breathe and it's haunting. I try to convince her to take the medications that will ease her anxiety but she shakes her head no. I think she is afraid she will not wake up if she goes to sleep. Her fear is real because it's true. There are a dozen more stories Mom from October, families who are mad at me, families I can't give answers, families who want better answers, patients I can't help. I want to get up and leave, I want to go home, but I take a deep breath and draw all the strength I can muster to push through the day. Every day is so intense Mom.

I went to church this morning Mom. It's the fourth time I've gone to church this year and the first time in six months. The last time we went to our church was in February and I cried as the choir sang Give Me Jesus.

And when I come to die,
And when I come to die,
When I come to die, give me Jesus.

Give me Jesus,
Give me Jesus,
You can have all this world, 
You can have all this world,
You can have all this world,
But give me Jesus.

I know that's what you would've sang on September 19, 2014 if you could've.

The sermon began and the pastor was starting a new series discussing truths we've adopted as biblical when they're not. Today's sermon topic was the phrase "God will never give you more than you can handle." I started crying as soon as they put the topic on the screen. The pastor discussed how the phrase isn't true and it isn't biblical. Nowhere in the Bible does it say we will not be given more pain than we can handle. He discussed how Paul was given more pain than he could handle:

"We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death..." 

I do not mean to compare the loss of you Mom to the sufferings of Paul, but his words are the words I feel right now. I found great comfort in the pastor's words and I cried through the whole sermon. He too said the greatest pain in his life, although incredibly common and normal, had been the divorce of his parents when he was 17. I wanted to say, "I know, I know." He said I shouldn't feel guilty that I still feel so much pain and so much sorrow over my losses. He said we would feel pain beyond our abilities, but with the help of others to uplift and support us, we can get through.

I think I'm a lot like you Mom. Just as you seemed to have an underlying depression your whole life, I too have always felt sadness. I remember when I made my poetry notebook my junior year of high school and made the theme "Loss." You found it a few years later and read it. You told me it was depressing and I said I know, but it's how I felt.

I don't think depression is what a lot of people stereotypically think it is Mom. I think you would agree. I am not incapable of getting out of bed, I am not incapable of feeling happy, I am not incapable of socializing and laughing. Everyone knows I love a good joke. But my heart has always felt heavy, always.  I have sought out measures to help me battle this through my life, but Mom, the loss of you, it was too much. It pushed me further than I can bear and I am struggling, more now than ever.

I'm going to post this on the blog and I've probably shared too much, I already feel embarrassed. I worry about the people who will look at this snidely and think that I just need to pull myself together. But I'm also hoping there are people who will read this and will understand what I'm feeling and maybe it will help them to know others feel the same.

Mom, don't you worry about me, I'm gonna pull myself together, I always do. Everything will be okay. I'll be fine, if for nothing more than my girls need a strong mom and I'm going to be a strong mom for them. But strong doesn't mean invincible and I hope to teach them that.

I miss you.

Love, Danielle

"...But this has happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1: 8-9

Final Preparations/Viewing/Obituary

It was only just a month prior Mom and I had the fiasco of no one showing up for our appointment to make final arrangements and Mom canceling the follow up appointment. I had left it at that and put it on the back burner for the moment. Before that appointment, as much as Mom hadn't really wanted to go she did make up a list a few things she wanted. As I mentioned in my Final Arrangements post she had crossed off the name of the place and written "Find somewhere else!" This loomed over me her final week of life. Should I find somewhere else? Maybe their mistake wasn't that big of a deal. I had already been in contact with them after all. But then I remembered that one of my "mom friends" I had met through an internet group and who happened to live locally had a husband that was a funeral director at Meeks Mortuary. I contacted her and she graciously helped me and got some information from her husband. I decided to go with Meeks. It gave me comfort to "know someone who knew someone" there. I felt things would be taken care of.

After Mom passed away, Meeks called me that afternoon to set up a time to meet with them to discuss her arrangements. We decided my brothers and I would meet them the next day, Saturday afternoon September 20, 2014. Sean and family were already at Mom's apartment in Muncie, and we drove up from Noblesville and Ryan drove down from Roanoke. Aunt Pat had arrived in town too that day. When we got to Muncie we dropped the kids off at Mom's apartment and Ryan, Sean, and I left for Meeks while Aunt Pat, Teal, and Spencer watched the children. I cannot tell you the last time I was in the same vehicle with both of my brothers. But there we were, traveling together in our hometown to finalize Mom's arrangements.

We arrived at Meeks and met my friend's husband. He helped us go through the details of what needed to be done. We had to give him information in order for them to fill out the death certificate. I had to text Uncle Darrell because they needed the spelling of Mom's mom's maiden name...Grzegorek. He gave me the information for the obituary, it was decided I would write it. On the sheet of paper Mom had listed with ideas for her final arrangements she had listed either cremation or an inexpensive casket. She underlined inexpensive. She said she wanted the cheapest package possible. We decided to go with cremation because she had mentioned wanting her ashes scattered in Lake Michigan if she was cremated. A step up from just basic cremation was a package that included a private family viewing. I'm not sure my brothers and I needed this, but I did it for her brothers, especially for Uncle Darrell. I felt he would want to see her one more time. My friend's husband then led us to the room with urns to choose from. Since we were planning to spread her ashes he suggested one of the biodegradable urns. There were only 3 or 4 of them. One was an American flag picture, I believe one was flowers, and one was a water and sunset scene...we chose that one. It reminded us of Lake Michigan.

As they had instructed I had brought her clothes for the viewing. I chose a green knit top I knew she loved and looked beautiful in. I remembered she had worn it to Amelia's 2nd birthday party just 6 months prior....she had been well then, or we thought, she had helped me so much with that party.

I picked out a skirt to match, a hat, her glasses, a pair of earrings, the same necklace she's wearing in that picture, her Mom's engagement ring and the butterfly ring I had given her. 

~~~

The next day we drove back to Muncie to meet everyone at Meeks for Mom's viewing. It was Spencer, Amelia, Lydia, and I, Carly and Ryan, Sean, Teal, Liam, and Noey, Uncle Darrell and Aunt Janet, Uncle Michael and Tammy, and Aunt Pat.  My cousin Jason and his wife Alyssa were coming but they were running a little late. We all went up to the room to see Mom. It was so incredibly odd to see her laying there in a makeshift casket. She did not look like herself. Her make up was all wrong, her nails were painted, her lips were in a firm line. I know it is what it is and I don't blame anyone, what could I really expect, but it was hard to look at her. It did not look like my Mom. I was glad then that we had decided not to do a public viewing. She wouldn't have been happy with the way she looked. I touched her hand and moved quickly on. 

I went on and talked to other family members. I have no idea about what. My cousin Jason and Alyssa soon came. Alyssa looked absolutely devastated, I could tell she had been crying...hard. I hugged her but didn't speak to her much. I don't know if I was worried about upsetting her more or maybe I did it out of self preservation. I wasn't ready to cry like that, but it moved me deeply as it did anyone who shed tears over my mother that people had such an extraordinary love for her.  I had coffee with her a few months ago and she told me what upset her the most was that she had never been able to give her one last hug. The last time she had seen her was July 4th at the birthday party. Alyssa and Jason had hosted and she felt she only quickly hugged my Mom goodbye. She really just wanted one last good hug.

I continued on talking to other family members. The kids were running around and we let them pretty much, it was nice to have the whole room to ourselves without worrying about keeping things composed and forcing children to be in line. 

I looked back to Mom and saw her brother Darrell kneeling beside her and talking to her. This touched me deeply as well. Her brothers had such a great love for her and him kneeling on the floor beside her was such a moving expression of this. He talked to her for some time, I don't know about what. 

He later mentioned to me the idea that if we were to spread her ashes maybe we could do it over the next July 4th for their birthdays up in St. Joe. I had not thought of this and thought it was wonderful idea. We did not do it this last July 4th...the first birthday without her, it was too hard...but hopefully we can do it in 2016. 

When it was over everyone left. Aunt Pat and I lagged behind so I could ask them to make leaflets or whatever they're called for her memorial. I had forgotten about this but Aunt Pat reminded me so we picked them out together. Before we left they gave us her jewelry and her hat back, we donated her glasses. For some reason I thought we would get her clothes back but then I realized that didn't make any sense.

We went back to the apartment and we had a party of sorts with appetizers and wine that Sean and Teal had purchased. 

I went home that night and typed out her obituary. It was not hard, it only took me maybe 10 minutes. The words came to me easily. It was simple, but I felt captured who she was. It was published in the Muncie Star Press Tuesday September 23, 2014.

September 19, 2014: The End

I woke up very early Friday morning about 4 AM. I went out to the living room to check on mom and Carly. Carly was curled up sleeping in the recliner. Mom was lying on the couch where we had placed her. She had begun a low gurgling in her throat...the death rattle as we nurses call it. The true term is terminal secretions and happens near the end of the dying process when the person has lost the ability to swallow. I got the hospice comfort kit and opened up the atropine drops as this is what they're for. I placed a few drops in my mom's mouth and I went back to sleep.

I awoke about three hours later and Carly and I both sat at the table eating the donuts Ella Mae had brought over the day before. I could tell mom was not going to wake up. Mom's friend Nancy was going to come that morning, she asked us if we needed anything. I said we were good, but she did bring us McDonald's coffee. After she gave us our coffee, she pulled up the glider next to mom, she opened her Bible and began reading it to her and praying for her. This touched me deeply and I thought, that's what I want when I die.

 I went to go take a shower and get dressed. I was going to leave, I had decided. I had spent a week watching my mother die and I had begun to think maybe mom was waiting on me to leave. She would be safe and taken care of with Sean and Carly there. Andy and Nancy would be there too. Nancy, being a nurse, gave me even more comfort that is was okay to leave.

Sean tells me he got up that morning and got ready at the hotel. He remembers going down to breakfast by himself and looking around at everyone there. Everyone was getting ready for their daily activities oblivious and not knowing what my brother was going to do. He was preparing himself to spend the day with his mom as she lay dying. Everyone bustled around him. Life goes on.

Andy came over as well as Pastor Tim who prayed for all of us and for mom. As he left it was late morning and Sean and his family came. Pastor Tim stopped them and asked if they had been in there yet. Sean said he had been there last night, he was prepared for what to expect as he walked through the door. They walked through the door and went to her. Little Noey hung back not understanding why Mams was making those noises.

When they came I went back to her room and quickly typed up a list of care instructions:

1. You can give the Roxanol (morphine) 0.5ml every 1 hour as needed, I've been giving it to mom probably about every 3 hours. If she should wake up, I would give her some, or if she anticipates moving to the recliner I would give her some.
2. The atropine drops are to help dry up the secretions she has in her throat, you can give 5 drops every 1 hours as needed.
3. If she would wake up, I usually ask her if she needs to go to the bathroom and will set her on the bedside commode and change her Depends even if they are dry. If she would like to change clothes I have those set out. If she wakes up she usually likes to sit in the recliner or maybe just move to the other end of the couch. To get her from the commode to the recliner I've been using the wheelchair.
4. I'm using the mouth swabs (green swabs) to moisten her lips and tongue as needed. There is also an antiseptic wash I've been using. Also, a mouth moisturizer for her lips or chapstick.
5. If she should wake up I would give her a Zofran tablet, they are disintegrating pills so just put one in her mouth with a sip of liquid.
6. Anything she drinks she will likely gag on but it's ok, if she wants to drink let her drink, it's for her comfort. There's some chicken broth in the fridge if she wants something to eat, I usually just warm it up in a coffee cup in the microwave. She likes a paper towel around anything she drinks. If she should want anything to drink, I would try to sit her up some if she's on the couch.
7. If she should pass, call me and I can call hospice, they will call the mortuary. If you need the number for hospice it's on the fridge.
8. If her phone rings it is probably hospice, just answer it, to answer it you press the Send button.
9. Please call me more anything.

I did not think she would wake up, but I wanted them to be prepared if she did and for her to be comfortable. My mom was a strong, extraordinary woman, it would've been just like her to wake up from dying and hand out some instructions.

After Sean arrived and I had given both verbal and the written instructions, I did not wait long to leave. I gave her some morphine and I cleaned out her mouth and moistened her lips. Before I left I kneeled over her, I said, "Goodbye Momma, I love you." And for the first time that day to my surprise she opened her beautiful fading blue eyes, looked at me, and mouthed silently the words, "I love you too." Those were the last words my mom spoke to me.

And I left. Without second thoughts, without hesitation, I knew she was going to die and I left. A thousand times since I have second guessed that decision, cried and screamed at myself for leaving her. However, I reflect back on that day and how sure I was that I was making the right decision and that brings me comfort. I will always have some regret for leaving her, for not being there for her final breath, but I know I made the right decision.

Teal and the kids left with me too. We could've traveled back to Noblesville together, but I asked that we drive separately. I needed to be alone. Teal understood. I drove back listening to Pink's "Just Give Me a Reason" over and and over again. I still listen to that song over and over. It has nothing to do with my mom dying, nothing to do with anything in my life really, but it resonates with me.

We went back to Noblesville stopping at McDonald's for some food. We ate at the house while the kids ran around. Spencer was there and Kristina had come over. I started what was the first of many loads of laundry.

I forget who texted me but they wanted suction for mom. I called Nancy and asked what was going on. The atropine drops were not enough for the secretions and they were beginning to overtake her. Nancy thought some suction might help. They had laid her on her side and this seemed to help too. I called hospice and let the nurse know what was going on. The nurse was surprised at her condition, but I told her I was not. Mom had put on a grand show for her on Monday. She said she would call the oxygen company to get suction there as soon as possible. I asked her if she could go make a visit since I wasn't there and she said she would.

I went back downstairs and I told Spencer and Kristina what was going on. I got clothes out of the dryer and put wet clothes in there and a new load of dirty clothes in the washer. I took the basket of the girls clothes to the dining room table and began to fold them. I stopped and went into the kitchen. My phone lit up on the dining room table, Kristina picked it up and said, "It's Carly."

And I knew why she was calling. 

I picked up the phone and said hello. Carly said, "Danielle...I wanted to call and tell you...your Mom has passed away."

Hospice had arrived after she died and they said  they would call the mortuary. Carly asked me if I wanted them to keep her body there until I got back. I told them no, that wasn't necessary, the mortuary can take her.

I got off the phone and told Spencer and Kristina. I cried but only for a brief moment, there was not time to cry, there was so much to do. I had told Carly to tell Ryan to please let people know. I didn't have the strength. I knew I would cry. I desperately wanted to call and tell my dad and mom's brothers, but I knew that that would break me.

Teal was asleep on the couch upstairs with Noey. At first, I thought I would just let her rest, she had gotten very little sleep the last two days. But then I remembered that she was more than just one of my best friends, she was Sean's wife and Sean would need to hear from her. So I went upstairs and woke her up and told her the news.

It took us about an hour but we finished up what we needed to do and we all headed back to Muncie. The mortuary had called me and I set up a time to meet with them on Saturday with my brothers. A woman from the church was scheduled to bring us pizza that night. She called me expressing her condolences and said she didn't want to intrude but wanted to know if we still wanted pizza. I said we absolutely still wanted pizza. She laughed.

We got back to her apartment and walked in. My mom who had lay dying on the couch when I left, was gone. The couch was empty.

We ate pizza and Sean told me the events of how it had happened. I called him again yesterday so he could give me the details again, this time with a perspective from a year passing by.

He said after I left, everyone had been near her but after they laid her on her side and she seemed more comfortable Andy, Nancy, Carly decided to sit at the table and eat a late lunch. Sean sat on the floor beside our mom. He was holding her hand when she opened her eyes. He tells me he didn't tell anyone she had opened her eyes. Sean and Teal's son Liam has severe autism and he said that when he engages with you, you don't go do something else or do anything, you just engage. And that is what he did with our mom, he locked eyes and engaged. The two sets of eyes that never saw eye to eye their entire relationship engaged and saw eye to eye. How incredible I reflect back on that day and that Sean was there with her as she died. The son who had left to spread his wings across the country in California over a decade ago had returned home. It was not Ryan and I who lived fairly close by and were part of her day to day life, it was Sean who was with her as she died. While never quite understanding Sean, she loved him fiercely, she was his biggest defender when he would go against the grain with others.

Sean tells me that at first the expression on her face seemed one of anger, but it was not. He describes it as "intense resignation." Death is what had awoken her and made her open her eyes. She had tried so hard to fight it, but there it was, as it will be for all of us one day. He rubbed her head and told her that it was okay, she could go on home, she had fought a good fight, she needed to go be with her parents. We loved her and we would be okay. Her eyes softened and she stopped breathing as she gazed at Sean. She passed away at 3:39 PM.

Sean called Nancy to her, to confirm what he suspected, that she had died. She agreed and Sean placed his hand over her face and shut her eyes. She was there for his first breath and he was there for her last. Sean tells me he walked outside for some fresh air and to escape the heaviness of the room. The day was sunny, the birds were singing, the wind was blowing. Life goes on.

The children played as we chatted at the table. Sean made a post to Facebook to let people know, as did I. I found a picture of her and her granddaughter Caitlyn who had passed away at 11 months old from spinal muscular atrophy.

The kids had taken off the cushions on Mom's couch and were jumping on it. We let them. Sean later made this post on Facebook:

Sean and Teal and the kids were going to back to the hotel. They would be checking out and staying in mom's apartment. Carly headed back to Roanoke and Spencer and I headed back to Noblesville. There would be so much to do in the upcoming days.

I went to bed that night, the bed I had not rested in since her decline had started, and reflected on what I had been through. My mom was gone in an extraordinarily short time from lung cancer. In just a mere 4 months, a season, she had gone from:

This

To this:

The clocks, they did not stop. Oh how I wanted them to, but they did not. There would be no time to cry for many months, there still has not really been any time to cry. Crying will make me tired and there is no time to be tired. There are many days I wish my heart would've stopped beating with hers, maybe it did, but life goes on. We have to hold our heads up and breathe through the enormity and the beauty of it all. 

I laid down in bed that night, and I shut my eyes and I went to sleep for the first time in a world without my mom.

~~~

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message She Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

She was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

--W.H. Auden ("he" changed to "she")

Stop All The Clocks Video

(If you have a 1:21 please watch the video)

Thursday September 18, 2014

Wednesday night was the same as Tuesday night, Mom did not move. Shelli brought me McDonald's for breakfast that morning and we chatted at the dining room table. Oh, how I grew to love these women who were my Mom's friends from church. What an amazing circle of friends I learned she had. What an amazing church Trinity Baptist in Muncie is. I do not use this word lightly, but my Mom and we all, were blessed to have them. What a profound difference they made in my family's life.

Sean and his family were flying in that day. Mom woke up at one point that morning and I repeated this news to her as I had told her the night before. "Am I really that bad Danielle?" she asked. I told her that they just really wanted to see her.

I talked to my brother Sean on the phone before writing tonight's post and he recounted the details of his experience to me. He told me Wednesday he had been at work at Humboldt University as a groundskeeper. He was mowing the lawns when I called to tell him I thought Mom only had 24-48 hours left. He had been talking to Teal as they debated what to do thinking about the drive, the cost, leaving their jobs suddenly, the kids, the dogs. He thought about the fact that he last talked to Mom on the phone, that was their last conversation. It didn't seem right that it end like that. He stopped mowing and began talking to a friend of his that worked in human resources. He told her what was going on and the turmoil he was experiencing. She told him, "Well, you only have one Mom." It started to rain which was surprising, it had not rained since last winter, they were in a drought. It started pouring. He could not mow. Sean and Teal decided at that point they needed to go. They got the kids and went home and packed up the kids and dropped the dogs off at friends. They left in the early evening and began the 5 hour drive to San Francisco. It continued to pour and the drive was treacherous as they traveled down the 101 through the forest and mountains. They could barely see. He remembers that the rain had stopped before they got to San Francisco and how beautiful the city looked at night as the drove in over the Golden Gate bridge. San Francisco was one of Mom's favorite cities. They pulled into the long term parking at the airport and they moved the luggage around and slept in the back of the van Wednesday night. They flew out early Thursday morning.

Thursday morning my Mom's friend Ella Mae came over bringing us food so there would be stuff to eat when Sean and his family arrived. I wondered if Aunt Pat had asked her to do this. Aunt Pat hadn't been able to come yet because she had to have a medical procedure. Ella Mae and I chatted in the kitchen and she was telling me about how the surgeon she used to work for Dr. Ansari was so ill. I believe he had Parkinson's as well as the dementia that comes with that. I think he may have been around Mom's age. He passed less than a month after her. Life is so short.

Spencer and Amelia came to get the breastmilk for Lydia I'd pumped and to bring the car seats so I could put them in Mom's car for Sean's kids to use. I remember Ella Mae joking as I was packing up all the bags of milk into the cooler if I thought I had enough. I knew it wasn't enough, it was never enough.

Pretty soon, there were a lot of people in Mom's apartment. Mom's friends came over, they wanted to clean out her fridge and freezer as there was so much leftover food and things that would never be eaten. I joked that as soon as they did that Mom would surely want something from there. Pastor Tim came and prayed for Mom and all of us. I believe it was that morning too that Mom's old neighbor from Woodbridge Cristie came over to see Mom. She had tears in her eyes as she finished up her conversation with Mom and said goodbye.

The hospice aide came and Mom got up. She was agreeable to getting cleaned up and the aide took her back to her bathroom. Amelia had sprawled out on Mom's living room carpet with all the toys Mom kept for the kids there. I went out to get the car out of the garage but couldn't find the opener. My Mom seemed to be in her own world at that time, but surprisingly I asked her where the opener was and she was accurately able to tell me where it was. I went out and put the car seats in.

Carly called and told me that she would most definitely be coming to stay with me that night and however long I needed. She was going to drive to Indianapolis to pick up Sean and Teal and the kids at the airport and would bring them back to the apartment and then would stay with me. I was so relieved.

Mom and the aide came back out from the bathroom. I asked the aide if Mom had voided. She said, "Yes, small, dark," and I nodded. Spencer and Amelia got ready to leave and I told Amelia to say bye to Mams. To my surprise she ran up to Mom in the recliner and jumped in her lap and gave her a big hug and a kiss. I was surprised, Mom did not look like the Mams she knew. If Amelia had been any older, I think she would've been scared of Mom, but she ran and embraced her with her childhood innocence.

They soon left and Sharon came as well as our family friend Barb from First Baptist. Sharon told me I should get out of the house for a little while, get some air. I decided to take her up on it and go to Target. Before I left Mom thought it was funny that Sharon and Barb were wearing very similar outfits and that they looked like twins. She instructed me to take a picture with my phone. After I took their picture, Mom looked at Sharon and said, "Would you please take a picture of me and my caregiver?" And so we took a picture. Our last picture together.

I left and went to Target. I stared and stared at the picture. Mom looked so different. I wanted to post it to Facebook, but I didn't know if I should. I bought a little jacket and hairbrush for my niece Noey and a vest for my nephew Liam. I worried it might be colder than they expected being from California. I stopped at the hospital to get more of the kits to clean Mom's mouth out with and to keep it moist. I sat in the parking lot and called Dad. He answered hesitantly and I told him everything was okay, Mom was still here and he breathed a sigh of relief. 

I came back to the apartment and Sharon left. Sean and family had arrived in town and were going to get settled in the hotel first. I told them to give me about 15 minutes notice so I could make sure was cleaned up and ready to see them. 

They all soon arrived with Carly behind them. Mom was surprised. She just stared in wonderment. Sean and Teal dropped their bags and sat down on the floor at my Mom's feet by the recliner. Teal had been called on the way to Muncie and had been told she was being offered a job at Berkeley. It was an extraordinary opportunity for her that she had interviewed for the previous week. She and Sean were ecstatic. They excitedly told Mom the news. Mom told Teal that she was just amazing. She kept telling them over and over that they were amazing, that this was just amazing that they were here.

Mom told me to come to her and she could hardly make out her words, but she was pointing to the freezer. She told me to check what was in the freezer so that we all could have some dinner. Of course. She was hospitable to the end. I told her Ella Mae had brought over food so we were okay. I hoped she wouldn't press it any further since the freezer had been cleared out. 

I asked her if she'd like something to eat and she said yes. I made her some chicken broth and tried to give it to her, but she gagged on it. It was too hard for her to eat. She was aspirating. Teal gave her some sips of tea. 

We all ate dinner except Sean, he stayed on the floor right beside Mom holding her hand.

After dinner, the kids were playing around. I was sitting on the couch and Liam squealed his happy scream. Mom looked at me wide eyed. I knew the sound must have been so intense to her. I told Sean I thought it was probably time for them to go and he agreed.

I had thought about it while they were there and I'd decided that on Friday I was going to go back to Noblesville for a bit. I had been gone a week and I knew there would be tons of laundry to do and I needed to get some things for myself. But mainly, I wondered if Mom was hanging on for me. Maybe...maybe she needed me to leave. So, I asked Sean and Teal if it would be okay if I left the next day for a few hours. Teal and the kids could come too and play with Amelia. Sean would stay with Mom. They agreed it was best.

They soon left and Carly and I got Mom ready for bed. Surprisingly she was stronger than she had been and she moved easily with us to the wheelchair, to the commode, and to the bed. We laid her down and Carly got ready for bed too. Carly came out and I told her I had been sleeping in the recliner, she could sleep in Mom's bed. She told me that I needed a good night's sleep and I should take the bed. I did not protest, it would be nice to sleep in a bed in a dark room instead of in the recliner with the living room lit up as Mom liked it.

Mom had fallen asleep, but before I went to bed I kneeled down beside her and whispered to her that it was okay for her to go. We loved her so much, but it was okay, she needed to go on home.

1 day left

Wednesday September 17, 2014

Tuesday night was different from the previous nights. Mom did not move at all. She did not get sick, she didn't need to void, and she didn't change position.

I had told my Mom's friends I would not be going back to work at this time. They didn't need to come, but they still came. They still followed the schedule they had created. Andy brought me a Panera souffle on Wednesday morning. I'd never had one before and it was very good. Then her friend Diane came, then Andy's husband Stu and Tim, the pastor of Mom's church came. We all sat around in the living room while Mom slept on the couch. It was so nice to have people around. We talked about how this was getting hard on her friends and they were unsure how to care for her at this point so they were glad I was there. I forgot not everyone is a nurse. Mom's care was fairly easy to me, it was second nature. As a nurse I had been trained for the daily care she needed and as a geriatric nurse practitioner I knew what to do medically and what to expect. As Stu remarked, "This is your bread and butter." And it was, this is what I do. How fortunate I was.

They all left after awhile and Sharon came. I texted people updates. I told them that at this point I thought Mom had 24-48 hours left. My Mom's brother Darrell called with some panic in his voice. He was at work in Indianapolis, but wanting to know if he should come. I reassured him it was ok, he had said his goodbyes and Mom was mostly just sleeping now. I would let him know about any updates. Sean seemed still very anxious about the situation and wanted to be in Indiana so badly. I tried to reassure him too, but it did not help. Looking at my phone bill from that day I can see I talked to Sean multiple times. Carly was flying back from San Francisco that day and she told me she would come be with me. My Mom's friend Cheryl came over and Sharon and I talked with her a while. I don't think Mom woke up at all during her visit. Sean called me again, he said they were coming. They were going to drive the five hours to San Francisco that evening and then would fly into Indiana the next day.

I called the hospice nurse because I had used the small amount of liquid morphine that was in the comfort kit hospice sent. She said she would call more into the pharmacy at the hospital. Sharon said she would go get it for me. I think it was around that time Carly texted me to tell me that she wouldn't be able to come that night. She had to do some things with her boys that night since she had been gone for 5 days. I said ok. I was going to be alone again that night. Spencer had the girls, he couldn't come and Kristina had to work. It was a week day, most everyone had to work or had families to be with. The pastor's wife offered to come spend the night, but I turned her down. She had four children and was pregnant, I didn't want to bother her. I crumpled to the floor in the hallway, feeling weak and alone from the enormity of it all. I sat there in the hallway and called my Dad. Tears streamed silently down my face as I talked to him. I'm not sure he knew I was crying. I updated him and told him I was stressed. He said he would fly in from Florida if I needed him. I know he desperately wanted to be there for me. I told him it was ok, everything would work out. He said, "That's what you always say." And I said, "It always does."

Sharon soon came back with Mom's medicine. It was about late afternoon/early evening and to our surprise Mom woke up and I mean woke up. What follows I described in my eulogy at Mom's memorial so I'll pull the details from there.

I rushed to Mom's side as she had woken up and first she told me to get out of her face. She sat up and oriented herself to her surroundings and apologized for snapping at me. She then had some requests to make. First she wanted a glass of water, a bottle of water, and her glass of tea. She wanted all of them on her bedside table and she told me not to move them until she said so. I knew my Mom was a particular person, but I did not realize how much until I had to do things for her. Then she wanted to be moved to the recliner. She absolutely insisted the legs be put back on her wheelchair. When I said this would make things more difficult she conceded but once she was in the recliner she insisted the legs be put on the wheelchair and the wheelchair be placed next to the recliner where she could reach it even though it would've been impossible for her to get in it herself at this point. She then requested the instructions to the wheelchair. There were no instructions. This greatly dissatisfied her and she would not accept that I said it was ok because I knew how to use the wheelchair. She asked what she was supposed to do if she was alone, she would need the instructions. I told her she would no longer be alone and she was not satisfied with that answer. Finally, I offered to write up instructions on how to use the wheelchair. She paused and thought about it a moment before finally saying, "Fine, but make it brief." It was impossible not to laugh and she sighed and said, "Well at least I'm still funny."

Sharon left to go eat some dinner and then head to Trinity for bible study. Her friend Barb from church stopped by for awhile. My Mom always loved hearing about her grandson Winston who had faced many medical adversities. She would always tell me stories of how impressive his skills were and what an amazing family they were.

Her friend left and I sat at the dining time. Mom kind of drifted off. I told her that Sean and his family were flying in. I had been nervous to tell her this. Would she know what this meant? Mom's death was a reality she never faced. She just looked at me like she didn't understand what I had said.

She fell asleep and when night fell I decided to get her up to try to use the bathroom and go to bed. I woke her up. She was terribly weak. I managed to get her into the wheelchair with a little help from her and onto the commode. She did not void. I tried to have her help me lift her to the couch, but she couldn't . She was so weak, and so I picked her up the best I could and carried her.

2 days left 

"The son went to his mother.

He picked her up and rocked her

back and forth, back and forth,

back and forth.

And he sang this song:

I'll love you forever,

I'll like you for always,

As long as I'm living

my Mommy you'll be"

I'll Love You Forever by Robert Munsch

Tuesday September 16, 2014

Monday night was another restless night with Mom getting up multiple times getting sick and having to go to the bathroom. I got up about 5:30 AM to get ready for work. I pumped at the dining table and then took a quick shower. I didn't want to take my eyes off of her for long. A little before 7 AM her friend Shelli came to cover the first shift of watching her. I had typed up a list of instructions for caring for Mom.

She awoke before I left and I told her I was leaving. I gave her a kiss and hesitated. She said, "Go Danielle, I'll be okay." I left and got in the car and left her apartment. I hated to leave her. I'd compare it to the same feeling I had leaving my girls and going back to work the first day after maternity leave. That feeling that what you are leaving is so much greater and more important than where you are going, but you must go. You must leave your child in someone else's hands and trust them to care for them as you would. Andy texted me a Bible verse as I was driving that I found extremely comforting. Again, how I wish I would've kept my texts.

I arrived to the first nursing home and got my work done there and headed to the second nursing home. Shelli texted me that a home health aide had been there to help her wash up and some work friends of hers had dropped by to see her. My Mom knew the home health aide. My Mom knew everyone. She was still very nauseous. I stopped to call the hospice nurse and tell her Mom needed something better for nausea. The compazine and phenergan were not working. She called the oncologist who ordered my Mom some Zofran. I know now that the steroid, the dexamethasone, my Mom took since May and that had just been tapered off before her decline was what kept her from having nausea and vomiting through her cancer treatment. I have an enormous amount of guilt I didn't know that it could be used to treat nausea. 

 I went on to the next facility, I don't think I did too much there. A nurse told me to go home, go take care of my mother. I left and stopped at Zaxby's to get something to eat and decompress a moment. The food was not good to me. I could not enjoy eating knowing my Mom couldn't, that she had not eaten anything in almost 5 days. I headed back to Muncie, stopping at Ball Hospital to pick up the Zofran. 

I arrived back at her apartment and another one of her friends was with her. Mom was sitting in her recliner. Her friend offered to get us dinner. I had her get a fish sandwich meal from McDonald's and a carmel frappe. The fish sandwich was the ONLY food Mom liked at McDonald's. Her friend left and I cut the sandwich in half and then her half in a quarter. I put it on a paper plate with some fries. I sat down and she said she wanted a napkin. I sat back down and then she wanted ketchup. I got a couple more things and finally she said "SIT" and so I did. She looked around and asked where her friend went. I told her she had left awhile ago and she looked confused. She said she swore she just saw her. We went on eating quietly, her in her recliner and me in the glider. She was able to eat a little bit of it slowly. She looked up again and looked around and then said to me, "Did you put a muzzle on Amelia?" I laughed. I told her Amelia was not here, she was at home with Spencer. She again looked confused. I finished eating and so did she. She had eaten one quarter of the sandwich and a few fries. She instructed me to save the other quarter sandwich for her and put the frappe in the freezer. I did as she wished. That was her last meal. If she had a grave to roll over in, she would knowing her last meal was McDonald's. 

I put everything from dinner away and she started to take off her shirt. I asked her what she was doing and she said she thought I'd told her to take off her shirt. I had not. My mind flashed to the hospice book the nurse had given us with the section titled, "As Your Loved One Nears Death What You Need To Know." It had said it was very common for them to try to disrobe. 

I sat at the table and worked on something, I don't remember what. She sat in her recliner and was asleep but talking to herself every so often and making hand motions.

I decided to move her from the recliner to the couch for bed. As I had done the night before, I helped her from the recliner to the wheelchair, from the wheelchair to the commode, from the commode to the couch. She did not urinate at all, another sign of dying.

My Mom had changed since I had left for work that morning. Her memory was worse, she was more confused and trying to disrobe, she was seeing things and was restless, she was not urinating. These were all signs of impending death. I knew I couldn't go back to work the next day. I knew the time was drawing near. Looking back, I know it was that day, while I was at work that my Mom and who she was, was gone. Her body was still there, but her mind was far, far away. 

I pulled the glider by the couch and held her hand for awhile, until she pulled it away from me. 

After a bit, I got ready for bed too and laid in the recliner. She became restless again. She said, "Hello? Who's there? Come in!" As if she heard someone knocking...

3 days left

Monday September 15, 2014

Mom did wake up Sunday night. She woke up multiple times. She got sick multiple times and I had to help her to commode several times. I switched to the recliner and had her sleep on the couch. Every time she sat up I woke up. She remarked at what a light sleeper I must be the same as she had said Labor Day weekend. I'm not a light sleeper, I just knew my Momma needed me.

I got up for the day and showered and dressed. I opened the blinds and arranged the curtains in the particular way my Mom liked them. I made several calls that Monday, I was on call for work too so those contributed. I made 21 phone calls that day. I called the lawyer. I asked her what would happen since Mom didn't sign the POA paperwork or a will. How would this affect things after she died? She reassured me everything for the most part should be ok. Mom did not have many worldly possessions or a grand estate that would need divided up thank goodness. She had designated beneficiaries on her insurance policies and retirement so those were taken care of.

Next I called and canceled all her appointments. One by one I checked them off the list...primary care doctor, oncologist, radiation oncologist, pulmonologist, wound doctor, podiatrist. There were so many appointments. I told each one she was going on hospice and they expressed their condolences.

I believe that morning I also went to her bank in order to get the certified check to pay her rent. Her friend Diane stayed with her while I was gone. When I returned Mom was asleep but Diane said she had sat up and stared out the window for probably five minutes. She didn't say a word and then laid back down.

It was getting to be afternoon and I hadn't heard anything from hospice yet about what time they would be coming so I called. I wanted to make sure she wasn't forgotten.

Mom woke up a little later. I offered to help her get washed up a little, but she said maybe later. She remarked, "I just need some ambition." It made me laugh. That was a saying she used her whole life. She had so many things she wanted to accomplish, she was always saying she needed some more "ambition." That was the last thing she needed to worry about now.

I texted Sean to keep him updated on Mom's condition, that she still hadn't eaten anything since Friday. I think he felt helpless in California. His trip in July was supposed to be his final trip to Indiana as they were 5 hours from an international airport and it was expensive and difficult especially with Liam's autism. I could tell he was getting anxious though and wanted badly to be here. He said he wanted to talk to her and I said she really just slept most of the day and was in and out of lucidity but I would try. He said, "Please Danielle even if it's just for a minute, I need to talk to her."

The hospice nurse called and said she'd be there about 5 PM. I woke her up about 4:30 and she sat up. I said Sean wanted to talk to her and I called him and put the phone to her ear. He told her about Teal's interview at Berkeley and Mom remarked at how smart Teal was and she knew she would do great. Sean told her how much he loved her and how he knew that he gave her a lot of trouble but he knew she always supported him. She put up her index finger as if trying to make a point that yes, while their relationship was tumultuous at times, she did love him and always wanted what was best for him. She said many things about how much she loved him, but Sean told me he had a hard time understanding her on the phone. We hung up and she actually wanted a cup of soup which I was excited about. Unfortunately the hospice nurse came about that time and Mom left her soup uneaten.

Of course Pat Sexton pulled herself together for the evaluation and interview with the nurse. She gathered every bit of lucidity she had and put her glasses on and sat in her recliner. She instructed me to go get a note pad to write things down. She had been trying to keep up in her calendar but she was too weak. My Mom's beautiful handwriting, the same handwriting that had personally addressed over 100 wedding invitations for me was reduced to scribbles.

The hospice nurse went through many, many things with Mom and I. She was there for three hours. She remarked about how she could already tell my Mom was a wonderful person and that she was going to enjoy having her as a patient. All I could think was that no, you're not, she's not going to be here much longer. Don't you see that? She asked my Mom what a tolerable level of pain for her was and Mom replied, "An 8." We both looked at her like she was crazy. The nurse tried to reword it, "No what level do you want your pain to be at where you would feel comfortable?" She still replied, "An 8." I laughed at that point. Seriously Mom? I tried to explain it to her and finally she said, "Fine, a 3," as she just threw out a number. She certainly did have a high pain tolerance. 

The hospice nurse moved on to a questionnaire for me as her caregiver. I'll never forget one question, "Are you emotionally dependent on your mother?" she asked. My Mom and I just looked at each other. I told the hospice nurse I didn't really know what she meant. "Dependent" sounded bad. I explained my Mom and I were very close, but I didn't feel "dependent" on her. My final answer was, "Yes, but in a good way." Without hesitation I know what my answer would be now. Yes, I am emotionally dependent on my Mom, in every way possible, good, bad, for better or worse. People who were close to my Mom and I could probably easily see that. If she was happy I was happy, joyful, if she was mad, I was anxious, worried, tearful. My Mom and I were not the mother/daughter type to spend every moment together or even talk on the phone all that often (once a week was the goal), but I was completely wrapped up in my Mother. I can see that so easily now. I didn't see it then...didn't feel it...until she unraveled from me. 

The nurse finished up the visit. Mom requested a copy of all her notes. The nurse looked a little incredulous but obliged and handed me her papers so I could make copies. She said she would visit Mom once a week unless more visits were necessitated. She said she was so happy to have Mom on her caseload, how sweet she was, and that she would see her next Monday. Again, all I could think was no, no you won't. She hadn't eaten anything in 4 days. She's not going to be here next Monday. Don't you see that? 

I decided to make a post on Facebook to let people know about Mom being on hospice. The cancer had come upon her quickly and she had not let many people know. I wanted her friends to know, I wanted my friends to know. She had deteriorated so rapidly, it was almost unbelievable. 

That post received 137 likes and 122 people commented on their memories of my Mom. I still go back to that post and reread the responses.

I needed to get ready for the work the next day and I needed to put Mom to bed. She had put on a grand show for the hospice nurse for 3 hours but now she was exhausted and weak. She was too weak to walk with her walker. I lifted her with her hands on my shoulder into her wheelchair, shifted her to bedside commode, lifted her up onto the commode so she could try to go to the bathroom, and then lifted her to the couch. It was such a process to get her a distance of only 5 or 6 feet.

The nurse had given me things I could use to clean out her mouth and keep it moist so I did that and gave her her pain medicine and a phenergan suppository. I kissed her goodnight, covered her up, and laid down in the recliner prepared for another long night.

4 days left

Sunday September 14, 2014

On Sunday September 14, 2014 the hospice nurse came out to evaluate Mom and her brothers and their significant others came over too. I can't remember exactly who came first, I think hospice may have come in the late morning and her brothers in the afternoon. Some time after my Mom passed I deleted all my text messages from that time, except the ones from my Mom, to make room for an iOS update. I regret that decision daily as there were so many details in the texts I sent and received that are now gone...

Sunday morning was a difficult morning and one that is forever etched in my memory. Lydia had been fussy during the night and was fussy in the morning too. She wanted to be held constantly. I remember my Mom had awoken in the living room and I went to the kitchen to fix a bottle for Lydia. When I walked around the corner to the living room, what I saw shocked me. My Mom was on the floor crawling on her hands and knees to the bathroom. I gasped and asked Mom what she was doing. She looked at me like it was nothing at all to be crawling on the ground. She said simply, "I have to go to the bathroom." She did not want to use the bedside commode, she wanted to go to the bathroom. My mind flashed back to Labor Day weekend when I had noticed her knees were red and her telling me sometimes she had to get on her knees to do things. She had been crawling when she was too weak to use her walker, that's why her knees were red. How long had she been crawling? This was such a shock to see my formerly strong, quick, active, dignified, beautiful mother reduced to a weak, pale, half-lucid woman crawling on the ground. Oh Momma, you didn't have to crawl, I would've helped you, I would've helped you. This brings tears to my eyes every time I think about it. I quickly put Lydia down even though she was screaming and I helped my mother to the bathroom. I helped her back to her recliner and covered her up. I decided at that point, I needed to take Lydia home. I couldn't take care of them both.

I believe hospice came an hour or so later and my Mom got up for her meeting with them. It was two nurses, a female and male, the male was in training. The hospice nurse knew my Mom's name. My Mom had worked on the clerical side of home health care and hospice for many years. She had never met this nurse but had spoken to her several times on the phone throughout the years. The nurse remarked that it was a pleasure to finally meet my Mom albeit the circumstances. She went through the details of hospice and what it would offer. Many people thought hospice meant Mom would receive complete nursing care in her home but I knew it wouldn't.  I knew it would only entail "visits" from nurses, aides, social workers, and pastoral care. They had volunteers who could sit with her 1 or 2 hours if needed but that was it. I knew she would only receive full nursing care if her symptoms were to become out of control and she required inpatient placement. While she was nauseous and weak, I did not feel she was beyond my capability to take care of at home. She wanted to be home. I did know that I would need her friends to help me though. I had to return to work. I had already borrowed money from my retirement to extend my maternity leave to be with her, I was out of days off, I was the primary income in our home, I had to go back to work. I e-mailed Andy to tell her that while I was taking Monday off for the full hospice admission visit, I needed to go back to work Tuesday. She told me she would figure something out that evening at church. The hospice nurses stayed for about 30-45 minutes and then they left. They said someone would return the next day. What my Mom said next I continue to find very reassuring since I was the one who made the call to hospice without her consent. She said, "I think I made the right decision." She then went back to sleep. 

I called the on call oncologist to try to get something for her nausea. She couldn't keep any food or medication down. She had not eaten one cup of soup on Friday. I told the oncologist what was going on and he curtly said, "She needs to go to the hospital." I said, "No, she's going on hospice. I want to keep her home. What about phenergan suppositories?" He softened and agreed and said he would call them in to her pharmacy. 

My uncles and aunts soon came after and they sat around in the living room talking to my Mom. I think they may have just come back from vacation. I don't really remember being too involved in the conversation, maybe I was doing things around her apartment. I think my Mom mainly listened but I do remember her saying to Uncle Darrell, "I need to say something. Because I'll never get around to sending a thank you note, I want to thank you for paying for our hotel stay in St. Joe over Labor Day weekend." What a gracious gift this had been to my Mom and I. 

I will also say to anyone who helped my Mom or gave her anything last summer she intended to send you a thank you note. She had them strewn across her dining room table, but never had the strength to fill them out. My Mom was not one to forget a thank you card. Thanks to her, I will never run out of available thank you cards. Unfortunately, unlike my Mom, I am terrible at filling them out. I even had special ones made after she died and I have yet to send most of them out. They are coming, I promise. 

Uncle Michael and Tammy went to go pick up Mom's prescription and get me some Taco Bell. I remember Uncle Darrell saying he wanted to tell my Mom something he had never told her before. My Mom was eleven years older than her twin brothers so when she went off to college they were probably only seven years old. He told her that when she would come home and then have to go back to Ball State he would be so sad when she left. Through tears he recollected that he would ask my grandma "Where's Patty? Where did she go? When is she coming back?" What a beautiful memory, my uncles had such a great love for their older sister.  They left soon after to head back to Indianapolis. That was the last time they saw my Mom. 

Early that evening Shelli and Nancy came by after church. I think it may have been Trinity's mortgage burning ceremony as it had been paid off. They showed me a schedule they had made up for people to cover her care while I was at work. My plan was to leave for work from Muncie about 7 AM and work as quickly as possible to see my patients in the nursing homes and then return back to Muncie. They made a schedule that covered her care from 7 AM to 6 PM. 

I left at that point to take Lydia back to Noblesville while her friend Nancy stayed with her. When I returned Nancy was reading and Mom was asleep. I thanked her for her care and she soon left. I remember going to do something, maybe to go to the bathroom, but when I returned my Mom looked different. She was pale, her mouth was slightly drooped, her head hung to the side. She had the look...that look like she was going to die. I so wanted to call Nancy and ask her if she'd noticed this too. Nancy was a nurse, did she notice the look? I sat down in her glider across from her recliner and just stared at her. I got up and felt her chest, she was breathing. I took a picture of her and sent it to Kristina. I asked her if she thought Mom had the look. She agreed, Mom looked very ill, she looked like she could pass away at any time.  At one point, I thought I might post that picture here in my blog, but I've decided against it. It's a personal picture I don't think she'd want others to see. I sat there and stared at her for a long long time. I texted a coworker to find out what I should do if Mom passed away at home...at night. Should I just call the mortuary? I was scared. It was night, I was alone, and my Mom looked like she was going to die. I got up and wrote down the number of the mortuary so I would have it just in case. I was scared to move her so I left her to sleep in her recliner. I once had a patient who died as I turned them in bed, I wasn't ready for that to happen to my Mom. I vowed that if my Mom woke up, I'd savor every last bit of time I had with her, every last bit of lucidity. I took off her glasses and laid them on the table.  I turned off the rest of the lights in the apartment but left the living room lamp on as she liked. She hated darkness. I laid down on the couch. After the crawling incident in the morning, there was no way I was going to leave her to sleep by herself in the living room anymore. I went to sleep, hoping she would wake up one more time.

5 days left

Saturday September 13, 2014

Saturday morning I awoke pretty early with Lydia. Lydia woke up before me and certainly before my Mom. She had been pretty fussy lately. I pumped while trying to entertain her. She was 3 months old but breastfeeding was still such a battle. I never had enough for her and still had to pump several times a day.

I worked on my Mom's bills that morning. She had not paid any for August except her September rent and that she paid out of the wrong account so the check bounced. Her apartment fined her $100 and wanted a certified check now. I would have to get that later.

It's likely one of my Mom's church friends came over that morning but I can't remember who. I had such good talks with Andy, Shelli, Sharon, and Diane throughout that week. I grew to love them in such a short amount of time.

I talked to Aunt Pat on the phone several times Friday and Saturday. The initial call on Friday was a hard one. I hadn't talked to her in a couple weeks and I said I wanted to let her know that Mom was declining and I thought she was nearing the end. Aunt Pat began to cry.

Lydia would not stop crying and crying and crying. I called Kristina to come help me, to watch Lydia. Surprisingly there was a lot of stuff I felt that I needed to get done while with my Mom even though she slept most of the time. I needed to figure out her bills, figure out what to do about hospice, field lots of calls, texts, and Facebook messages asking about Mom and I wanted to go through her old pictures to start to put together a video for her funeral. I failed to mention in yesterday's post that I'd also contacted her lawyer Friday morning to find out what to do about Mom signing the power of attorney paperwork. The lawyer had been shocked Mom was deteriorating so quickly. She had seen her a month ago and she looked pretty good. Friday morning I'd worked out with the lawyer that I would bring Mom back to Noblesville and on Monday the lawyer would come to the house and have her sign the papers. That plan was pretty much out the window by Friday evening, but I wouldn't be able to get ahold of the lawyer until Monday.

It was noon and still I had heard nothing from hospice so I decided to call them directly instead of going through her oncologist. I felt bad knowing it was the weekend and staff would be limited and really only available for emergency situations, but I needed to get the ball rolling. I could provide the care but I knew I would especially need the comfort medications like morphine and atropine. I knew what would happen as her body began to deteriorate and I wanted to be ahead of the game. I did not want her to suffer any more than she already was. The woman I spoke with was very kind and she said she would get back with me once she got ahold of a nurse. A nurse called me back soon and told me she would get things going.

Mom awoke in the afternoon after Kristina arrived. Every time she woke up she got sick. She was hungry, but she knew she couldn't eat. I came over and sat by her on the couch and told her I'd worked on her bills that morning. I had her sign the checks one by one so I could mail them. I remember her saying, "This is good, this makes me feel like I'm worthwhile and getting something done." I told her I contacted hospice, that I needed their help to make her more comfortable. She didn't really have anything to say in response. Soon she laid back down.

About 3 PM my phone started ringing and I picked up. It was Dr. Songer. I mentioned him in my Memorial Day post in May that he was a retired oncologist who was now the medical director of IU Ball Memorial Hospice. He was a family friend and he'd called in May to see if he could offer any information or support before Mom began her cancer treatment. He called now to tell me they would get Mom on board with hospice. He said he made sure one of the best nurses was coming out to evaluate Mom and that she would be there tomorrow. I hung up the phone relieved. I greatly appreciated the personal call from him. I had been heard, we were going to get some help.

6 days left

Friday September 12, 2014

I awoke on Friday morning to a text from my Mom's friend Andy. She said she was worried about Mom and we needed to talk. I told her that I was worried about Mom too and I had come down the night before and was staying with her. She responded telling me how much relief that had brought her to know I was there. She said she was going to forward me some e-mails my Mom's friends who had been visiting her daily had exchanged.

The e-mails all said basically the same thing, that Mom was getting worse and she was at a crucial point. She had been more confused, not eating, not taking her medications all week. They thought she was in need of 24 hour care at this point, that while she thought she could take care of herself she could not. I responded that I was in agreement with everyone else, but I wasn't quite sure what to do at this point. Should I take her back to Noblesville with me or stay with her here? I did not think she had very long at this point and I preferred to stay in Muncie with her so she could be in a familiar setting and surrounded by her friends and church family. I told Andy I planned to contact hospice even though I had not yet been able to get her to fully agree to that. At the beginning of her cancer diagnosis she told me that yes she wanted hospice when the time came. The thing is my Mom never believed that time was coming. I don't believe she was ever going to let herself believe that she would succumb to this cancer.

Andy sent me a final e-mail response that I still appreciate and reflect on:

Dear Danielle,

When I was with your Mom, we spent a portion of the time in the restroom. She had become nauseous and I brought a chair in for her and rubbed her back. We talked about stuff. Life stuff. She mentioned you worry too much and I replied, yes, but that God had given you strength that can handle things. She agreed. 

Danielle, this has been an awful year for your mom. God chose this (illness) to wean her from this sad earth. You and your family and your brothers have been a constant source of JOY for her in this dark time. My tears are flowing. My prayers are continuing...

The email brought tears to my eyes too as I knew it was true. As I've described in previous blogs, for whatever reason my Mom had been deeply troubled in her life, despite her cheerful demeanor and positive attitude, her heart had always been sad. Our family spent our life trying to make her happy, but it was never enough. Her depression if that's what it was was beyond our reach. While I miss my Mom dearly, I ache for her every day, I believe God took her because he saw her anguish and knew she had had enough. It brings me great comfort believing she is with Him in Heaven, free from her sadness.

Many people came over that day, I cannot remember them all. I know Ryan, Carly, and Lucas came for a few hours. Carly was leaving on Saturday for a conference in San Francisco until Wednesday. I was scared to find out that news. I needed Carly. Shelli and Nancy came over too. Lucas was playing with toys. Mom bragged about how smart little Lucas was. He was not yet two but if he needed his diaper changed he would bring Ryan and Carly all the supplies. He was pushing around a toy stroller. Mom told her friends that the stroller had been mine when I was young, it had not, but I did not correct her.

Nancy pulled me to the side at one point in Mom's hallway and asked what the plan was. I told her I wasn't sure. I wanted to call hospice, but Mom had not agreed yet. I did not want her to get mad at me, but I needed their help if she wanted to stay at home.

The lady from the home life alert company came by. I didn't know she was coming that day. We apologized and told her we wouldn't be needing the service after all. She would no longer be left alone.

Eventually most everyone left. Ryan, Carly, and Lucas all said their goodbyes. That was the last time Ryan saw Mom.  I was worried about Spencer having to take care of both girls so I decided I would go get Lydia and bring her to Muncie. I foolishly thought I could take care of my Mom and Lydia at the same time. Before I left I called her oncologist's office about 10 minutes before they closed and asked for a referral for hospice. The woman said she would see what she could do. My stomach was in knots because I knew the weekend was upon us. Would anyone respond? Was it too late to get help? What if she passed away this weekend?

Andy stayed with Mom as I drove back to Noblesville and packed some things and brought Lydia back with me. When I got back Mom was asleep. Andy asked me how long I thought Mom would go on for. She had only eaten a cup of soup that day. She was still nauseated and vomiting. I thought about it and said, "I think she has one week."

7 days left

Thursday September 11, 2014: The Beginning of the End

September 11th always evokes a day of reflection and sadness for me as I'm sure it does most Americans. I was a freshman in college at Purdue the day of the terrorist attacks on America. I walked by a big screen TV in the Union and noted all the students gathered around it. I naively thought it must be some big sport event. I walked on to my chemistry class and sat down clueless to what was going on. I do remember what my professor said though, "Bad things happening in the world, but we must go on with chemistry." After class I walked back to my dorm and my friends told me what had happened. I still don't think I grasped the gravity of the situation. My mom and boyfriend called to check on me, to make sure I was okay and I began to grasp how scared everyone one was.

September 11th now also marks another day of reflection and sadness for me. It was the day that marked the beginning of the end for my mother, the day I knew the end was near.

I had been able to get off work early on Thursday and I stopped at Starbucks before I went home. I sat there thinking about my mom. I planned to go visit her that weekend, possibly take Amelia with me. We would leave Saturday morning and return home Sunday evening. I hated that I could only spend weekends with her. I wanted her to be close to me. I remembered something a nurse Lisa had said to me at The Forum and I made this post on Facebook:

I went home after that and then later I believe I dropped the girls off at Kristina's as she was watching them the next day. I went to Target after that. I called my mom as I was leaving Target and I asked how she was doing. She said, "Did Aunt Pat tell you to call me?" I said, "No, why?" She croaked out, "Oh Danielle, I don't feel good, I don't feel good at all. I'm so tired." She had been having nausea and vomiting the last couple of days she told me, she had hardly been able to eat. I told her I still planned to come on Saturday morning, but maybe I could come Friday after work instead. She responded, "Oh Danielle, please come Friday if you can." I said I absolutely would and I then I said, "Mom, I need you to think about this, I want you to come home with me on Sunday." Without hesitation she said, "Ok." I paused and she said, "You didn't expect me to say that did you?" I had not, not so easily. I told her I loved her and we got off the phone. I burst into tears. She's dying, she's dying.

I work with geriatric patients in long term care facilities and there is usually a moment I can pinpoint when the terminal decline begins. They grow so tired. They stop eating. I knew my mom was there. 

I cried the whole way home. She was dying. The end had come. I got home and Spencer asked what was wrong. I just said, "She's dying." He tried to be positive, to say she was not.

I got ready for bed and laid down. I laid there a few minutes thinking about my Facebook post and my mom. I needed to go, I needed to take care of my mom. It was time. I needed to go to Muncie. I needed to go home. 

I quickly packed a bag and told Spencer I was leaving. I was going tonight. I quickly texted her to let her know so she wouldn't be startled since it was late.

That is the very last text between my mom and I.

I drove to Muncie reflecting on three years prior in September when I had made a similar journey for my niece Caitlyn. Carly had called me worried about Caitlyn, she was not moving as much, she looked yellow.  Ryan and Carly had found out in June their perfect baby girl had the terminal diagnosis of spinal muscular atrophy. In September she had been in the hospital with pneumonia, she hated the bipap machine and they decided at that point to not pursue aggressive care. I drove up in the middle of the night that Friday and stayed with them through the weekend. She stopped breathing twice and I talked to them about hospice. After an ER visit this was the avenue they decided to pursue. She was given 48 hours but by the grace of God we were given 4 more months to treasure her. 

I arrived at mom's apartment and walked in. She was in the bathroom, she had been vomiting and was cleaning herself up in the sink. She was so pale. She walked back to the living room and sat down on the couch and I sat in her recliner. We talked a little bit and then she said, "Danielle, is there anything that can make me better?" I told her there might be, but at this point she would need to go to the hospital. She just looked at me, she did not respond. She said it was time to lie down. She told me to lie down and go to sleep. And so I did.

8 days left