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

Lasts

At first I wasn't even going to make a post about this day but then I realized it was important to me because it was the last time my Mom ever took me out to eat and the last time I ever rode in a car with her.

It was Sunday September 7, 2014 and Spencer, Amelia, Lydia and I headed to Muncie in the early afternoon. The day before had been our sixth anniversary and Mom wanted to take us out to dinner. I texted her that we were aiming to get to her apartment about 1 PM. She texted back "~1:30 PM ;)". I laughed, she was right she knew I usually ran 30 minutes behind.

We got there and decided to go out to Johnny Carino's for lunch. She had coupons. She almost always had coupons. Mom had a big file folder of restaurant coupons and I enjoyed going through it and finding a good restaurant and a good deal. Going out to eat with my parents was always a special time for me. As my brothers grew older and moved out, going out to eat happened a lot more. Most certainly we would go out to eat on Friday night or order in and maybe even on Saturday too. My Dad would joke that even if I hadn't been around all day I always seemed to show up when it was time for food.

Dinner was good but a little hectic as is usual with little children. I believe both Mom and I both had the lobster ravioli. Lydia was half asleep in her infant seat which required rocking every so often. Amelia was sleepy and insisted on sitting in my lap and resting her head on my shoulder most of the meal. I ate with one hand. My Mom and I joked about my first Mother's Day when Amelia was less than 2 months old and required holding the entire meal. My Mom cut up my food for me. We left pretty quickly as both of the girls were getting restless. We stopped at McDonald's on the way home to get my Mom her carmel frappe.

We arrived back at her apartment and I tried to get her medications organized for the week. She took a lot these days and I had bought her a divider for morning, afternoon, evening, and bedtime. Every week I would put her pills out and type an updated list of all her medications. The list required updating at least once a week. Something was always being added or changed and something always needed refilled. I grew confused myself trying to organize her meds. It made me realize how unlikely it was many of my patients were taking their meds properly at home. I noticed she was missing most of her morning medications. She slept through them. I cut her long acting morphine down to twice a day since she was missing the morning dose anyway.

We were getting ready to leave and I told Amelia to tell Mams goodbye. My Mom was sitting in a chair and she ran up to her and gave her a big hug. Amelia is not always affectionate so this was a sweet moment. I tried to capture it on my phone camera but I was out of memory.

We left and I texted her when we got home that we made it there safely and she texted back that she had just finished talking on the phone to my brother Sean.

~~~

To make this blog I have been reviewing a lot of texts between my Mom and I for information. I used to have to scroll and scroll and scroll, but today I only barely had to move the screen a little. It's surreal that I'm almost at the end of our text conversation. I have them saved all the way back to August 2013.

September 7, 2014 was the last meal I ever ate out with my mother. It was the last car ride I ever took with my Mom. And it was the last time I ever left her alone in her apartment. On Thursday September 11, 2014 I would be coming back to stay.

12 days left

I'm Not Going

On Wednesday September 3, 2014 my Mom and I had an appointment in the afternoon to return to the lawyer to sign all the documents including the power of attorney, living will, and papers to apply for Medicaid. Lydia had a minor surgical procedure that morning so the plan was for Spencer to go pick her up and bring her to Noblesville.

The evening before I received a call from her that I missed and she had left a voicemail. The voicemail said:

"Hi Danielle, when you get a chance will you give me a call because I'm totally confused as to whether today is Tuesday the 2nd or Wednesday the 3rd and talking to someone from church has confused me more. So...thanks honey, buhbye." 

That is the last voicemail I have saved from my mother.

I called her back and told her today was Tuesday September 2nd. I told her the plan for the next day was for me to go with Lydia to her surgery and Spencer would pick her up and bring her back to Noblesville and then we would go to the lawyer. She asked if it was really necessary to go to the lawyer the next day and I said yes it was. She said she didn't want to go and  I just said, "Ok." I figured the next day when she was feeling better, less confused, and more collected she would be willing to go to the lawyer.

I texted her back and said, "I know it's all confusing and overwhelming. Call me back if you need to vent. I love you."

The next morning I took Lydia to her surgery. We had to be there very early at 5:15 AM and the procedure was scheduled for 6:15. Her procedure went well and we went back home. I texted her as we were heading back about 7 AM that Spencer was going to pick her up about noon. She texted me back and said, "No, I'm not going."

I sighed. I couldn't force her to go, but this was a really important appointment. Why wouldn't she go? I just needed her to sign papers, important papers. I stewed downstairs when Spencer came down and he said he'd just gotten off the phone with my Mom. He had tried to convince her to go but she wouldn't. She had told him her house was just a mess and she couldn't leave. So he offered to drive to Muncie to help her out. I knew her house wasn't a mess, it was never a mess, even if she was deathly ill should would still keep her house clean even if it took every last bit of strength she had. However, I really appreciated Spencer volunteering to go. I knew Spencer would be a calming presence to her, a fresh face, a break for both my Mom and I.

He came home later and said of course her house wasn't a mess, but he helped her pick up some things, do her laundry, and vacuum. She slept out on the couch as she had done since she moved in the apartment. Carly had brought her a bedside commode about a week or so before so she wouldn't have to walk to the bathroom in the middle of the night. Instead of waiting for her friends to come and empty it, she would drag it back to the bathroom. I didn't understand how she was doing this with her walker and her only response was that it took her time but she got it done. She refused to have a commode left out in her living room. That day she had left it out and Spencer emptied it and encouraged her to just leave it out in the living room. No one was going to think less of her. I think after that she obliged and left it out. He said she had not unpacked her bags from our weekend trip which was also unusual for my mom. He asked her why and he said her response was "In case I need to go somewhere."

I am forever grateful Spencer went to Muncie that day to help her. The fact he called her and went on his own volition meant a lot to me. She expressed that evening how grateful she was for him coming and that he made her feel so much better.

We never did make it to the lawyer and she never unpacked those bags.

16 days left