the beginning of the end: july 26, 2016

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On July 26, 2016, at about 14:30, just before I was about to go to visit Mom in Dementia Jail, I got a call from that day’s charge nurse.

“Your Mom had a seizure this morning,” she said.

There were two things that were strange about the call. One, that I was being called at all because the nurses were under orders not to give me any information as I was not the one in legal control of my mother’s care, and two, that Mom had had a seizure. She’d never had a seizure before.

“The caregiver tried her best to catch her before she fell, but she didn’t get there in time,” the nurse added. Something was odd about this as well. How could the caregiver have not gotten “there in time” if she were by Mom’s side as she should have been? And how could Mom suddenly have a seizure so violent that it would catapult her out of the wheelchair in which she had become confined and onto the floor in a nanosecond?

“What kind of seizure?” I asked.

“A seizure,” the nurse repeated. “She was on the ground, and turning blue. She’s okay now, but I wanted to let you know.”

If Mom were “okay,” the charge nurse wouldn’t be calling. They don’t tell me anything. And now a “courtesy call?” Something’s really wrong. I immediately stopped what I was doing, and drove the three minutes it took to get to Mom.

I found her sitting wide-eyed and upright in her bed; oxygen being pumped into her nose. She was talking a blue streak of gobbledegook to an empty room. Her face and right arm were bruised, but not too badly, at least not then. I sat down on the bed beside her. She babbled on. I agreed and empathized with whatever it was she was trying to communicate.

After fifteen minutes or so, a different charge nurse than the one I had spoken with on the phone came into the room. Three o’clock shift change.

“Patti took a tumble this morning, didn’t you Patti?” The nurse said in that tone that made me want to choke her. She turned to me. “You can stay as long as you like. Don’t worry about the time,” she smiled.

Alarm bells pealed in my head. My daily visits had been restricted to between one and three in the afternoon since February 2015, and today Nurse Ratched was saying I could “stay as long as” I pleased? Mom must be dying. Why didn’t they take her to the hospital?

“Have you seen Gran?” I asked Mom. “She’s taking care of you.” My voice cracked. Tears threatened.

I thought music might help (as it usually did), so I asked if she would like me to sing her a song. She said yes. My voice caught in my throat again as I began, and I was astonished at what happened next.

I checked in on her physical and mental state (she said she wasn’t in pain, nor was she hot or cold), and acknowledged the frustration she must be experiencing.

I asked if I might clean her mouth; it looked as if it were bleeding. I cleaned it a bit with a warm cloth, and then launched into “Take me out to the ballgame.”

Whenever her agitation seemed to be mounting, I began a new tune. She joined in every time. She knew all the words. We repeated “When you Wore a Tulip” several times; we also sang the “Battle Hymn of the Republic,” “Baa Baa Black Sheep,” “Mary Had a Little Lamb,” “Ring Around the Rosie,” “Three Blind Mice,” and others. This, despite her not being able to enunciate individual words, let alone string them together in an intelligible sentence.

I brought her several glasses of water, and helped her to drink because she couldn’t move her right arm. She kept accepting more water, which finally staunched the bleeding in her mouth. Why aren’t they hydrating her? Why is she bleeding in her mouth? Has she broken some teeth?

My best efforts to be brave and hide my tears failed on several occasions, even though it looked like Mom seemed better than I had originally thought when I arrived. After about an hour, the charge nurse returned to say the person who was in legal control of Mom’s care would be coming. Time for me to go.

“Remember that I love you,” I said to Mom. “And I’ll be back tomorrow.”

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

jillian jiggs and a mind of her own: july 27, 2016

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

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3 Comments

  1. Connie Rifenburg on

    You were so brave Susan. It is so heartwarming to hear your mother pick up on songs as you sing them. Group singing was popular in our family when I was young. My great uncles, aunts, and grandparents would get together with a songbook and someone on the piano and sing those old songs along with us kids and I remember all of them! As I’ve said before, one of the last things that left my mother mind was her love of big band music and my sister and I would play CDs with Glenn Miller and dance mom around. Funny how she could move without her walker when you held her to dance! Music is truly a treasure that can be shared no matter how far along the disease path your loved one is on. That is the happy part of your story.

    I couldn’t help but be angered once again hearing about her “seizure” and the fact that they left you to care for her after the fact without following up on what caused it or explaining what really transpired. As you remember, my mother died from the results of a fall that the home tried to cover up also. It must have been so terribly frustrating to you not to be able to control your mother’s care and yet you continued to remain strong for your mother’s sake – to make the best of the limited time she had with you. Thank you for continuing your fight for all those ‘other’ mothers whose daughters are having to walk in your shoes now. We can all hope for change in the near future because of people like you.

  2. Did you ever get any success with having your Mum hydrated? I have tried to get water placed in reach of my mother either on an over bed table or a small stool as suggested by the facility but it just doesn’t happen. My brother and I offer her a drink when we are there and she is usually thirsty but it’s often around a mealtime and I fear she may only get 3 cups of fluid some days..

    • M. Susan Macaulay on

      Janelle, I thought I had answered this, but apparently not. No, I didn’t manage to get her sufficiently hydrated, despite my best efforts. It was all very sad 🙁

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JM