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
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