Dementia Diaries: A Journey With Dementia: Wednesday 7/26

I didn’t get a post up last night because, in all honesty, we thought her time was close and we were all gathered around her into the early hours of the morning (until we all started passing out ourselves from sheer exhaustion of the past few days).

After my last post on Tuesday night, we went to turn Mom, who had been in a deep, unmoving sleep for hours, and she was non-responsive. She was still breathing, but it had become labored and she was only taking 6 apnea-like breaths a minute. She was running a low grade fever and she didn’t even flinch when we touched or tried to move her. We gave her a Tylenol suppository, checked her blood pressure, moved her body, changed her diaper…and absolutely no response to any of these things. By all accounts, she seemed completely comatose. I called the hospice nurse helpline and they sent out a nurse to check on her. The nurse arrived around 11:00 pm and I could tell by the look on her face that she was concerned. I could tell that she was choosing her words carefully and hesitant to say what she was thinking so I told her that we understood what the breathing meant. She got tears in her eyes and told us that she was so sorry. She felt that, in the state she was in, she was likely to go by the next day (yesterday). By the time we were finished talking and assessing, it was midnight, and I sent out some texts to her siblings to let them know, in case anyone wanted to be by her side. I called my brother so he would know to get here soon (my sister had already come over just before the nurse got there). I also called Aunt Sharon, who had been here earlier in the day and wanted to know if anything changed. She and Uncle Tim came over right away (and she’s been here ever since, as Mom’s personal RN).

None of us got any sleep that night. We each took turns to have a private moment with Mom to say whatever we wanted to say to her. We sat by Mom’s side and held her hands…and just waited. All of the sudden, at 5:30 in the morning, Mom woke up and almost immediately started trying to get up, but she hardly had the strength to sit up (it required someone sitting behind her to hold her up). She became very agitated and restless and was looking around at each person in the room. At different times, she would grab our hands, one time she looked at me and brought her hand up to my face. Other times, she would stare intently at different spaces in the room where nobody was sitting, yet it seemed that she was looking at someone. [There was also a moment earlier in the day where she rolled over in her bed and stared straight into my empty rocking chair (I had moved to her bed to rub her legs). She looked right where I’d been sitting and then slowly reached out her hand to the armrest, just like she had been reaching out for our hands throughout the day]. She also kept pointing to the corner of the room and fixing her gaze there. Sometimes, her face looked pained and she kept trying to turn over to get comfortable. We gave her some meds to try and calm her but she wasn’t settling down. The nurse came by again and gave her a stronger medication to help her relax and finally, around 11:00, she curled up in her corner again and went back to sleep.

My brother got in at noon and spent time by Mom’s side, rubbing her arm and stroking her hair. Mom had some visitors trickle in throughout the day, including a couple of her caregivers who have been relieved of their duties but still wanted to be with Mom (they’ve come to love her over the time they’ve cared for her). Her bathing nurse also made a visit and we gave her a bed bath. She slept through it, although she was a little more responsive his time around as she kept trying to turn back over on her side.

Her breathing remained the same throughout the day, 6 breaths a minute. She didn’t wake up again, but she seemed to be comfortable and not feeling any pain. That evening, a family friend (and Ecclesiastical leader from our church) came to visit our family. He gave my mom a sweet prayer blessing, blessing her with the comfort to know that her family is here and loves her, that we will be okay and lean on each other to get through this. He told her that there are angels on the other side, family members who are waiting to help her on both sides. He also left my dad and me with a prayer and blessing of strength and comfort to get through what is to come. It was a nice visit and he left us (or at least me, since I can only speak for myself) with comfort and a little more peace. The anxiety and knots in my stomach that I have been feeling for the past couple of days have finally settled. I needed that prayer.

Later that night, we rolled Mom to a new position and heard some rattling in her chest. Her pulse has gotten weaker and Aunt Sharon felt like she was getting closer to the end. We all gathered around her bedside: my dad laying by her side and her kids and grandkids surrounding her and rubbing her and holding her hands. We stayed like that for a couple of hours, until the exhaustion of the past few days became too much and we started to fall asleep, one by one. The kids retreated to their campout on the living room floor, my brother and his wife took the bed across the hall from mom, and the rest of us crashed on Mom’s floor or in chairs. Dad didn’t move from her side on the bed. Throughout the night, we all awoke at different times to check on her. Miraculously, she is still here with us this morning. Her brother flies in from Pennsylvania at 1:00 this afternoon, and I told her a few day ago that he would be here. They were very close throughout their lives and he’s the only sibling that hasn’t been here to give his good-bye. I do believe that she hears us and knows us at this state and several of us feel like maybe she is waiting for her brother. We also have a couple other family members coming (my daughter comes at 4:00 today and my Aunt Peggy, dad’s sister, comes at 7 am tomorrow). When Mom is ready, she’s ready. Until then, we are keeping her comfortable and cherishing our last moments to love on her in this life.

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