Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie’s Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.
By the time I got back to the hospital, Mom was awake. She was groggy from the anesthesia but she didn’t seem to be in a lot of pain, so that was a relief. Her left arm was in a cast and the right arm had what looked like an erector set sticking out of it, which is known as an external fixator. There was a 5-inch half moon of stitches that closed the wound where her bone had broken the skin. It was ragged and looked like a shark bite. I was relieved when the nurse began to bandage the whole arm to include the fixator so Mom would not have to look at it. Although, truth be told, I am pretty sure it freaked me out more than her.
The nurse said they would take her to a room and I should plan on her being there for a few days. Once we got Mom into a room, the floor nurse promised to take good care of her and suggested I go home and get some sleep. I explained about Mom’s dementia and that I didn’t want her waking up in a hospital room, wrapped in casts and metal and unsure of what had happened. The nurse said the lounge chair next to Mom’s bed pulled out into a single bed and there were pillows and a blanket in the closet. Mom seemed relieved I was there and we both eventually dozed in and out. Any one who has been in a hospital knows it is no place to get rest. Nurses are in and out regularly to check vitals and change IVs and the doctors begin rounds early in the morning. Even when Mom could sleep, I never really did. Any movement she made or sound from the nurses startled me awake, afraid she was in pain or that she would try to scratch her nose with her right arm and take out an eye with the fixator.
A few hours later, it was morning and the orthopedic doctor and the hospitalist doctor came and did rounds. Mom was pleasant but very confused. She had had a rough 10 hours. I knew from the research and classes I had been taking that trauma, anesthesia, pain medication, change in environment, pain, and lack of sleep all impacted cognition and were especially detrimental to those who already had dementia. I was starting to wonder if the doctors understood that. They asked her questions over and over that she could not answer and they seemed to be frustrated with her like she was intentionally evading their questions. One kept asking if she had hit her head and wanted to do a CT scan (even though we ruled out a head injury in the ER). It was like he thought there must be some reason other than Alzheimer’s and all the other circumstances that were causing her confusion. I pulled both doctors aside and explained that she had Alzheimer’s Disease and that I would be happy to answer as many of their questions as I could. The orthopedic doctor said he understood and that he would not be seeing her again until discharge unless there was a complication. The hospitalist told me that they really needed to get the information directly from my Mom, not me; they couldn’t assess her mental state otherwise. Her mental state was this: her brain was damaged from a nasty progressive disease made worse by heavy meds, trauma, and pain! It didn’t seem that odd to me that she did not remember how she fell or what day, month or year it was, but I kept my mouth shut and waited for him to leave.
After rounds, the nurses came in wanting to see if Mom wanted breakfast and if she was going to be able to ambulate to the bathroom. I ordered her some breakfast and helped the nurse get Mom upright to see if she could stand. If she could transfer to the bedside commode, they could remove the catheter. She was still pretty unsteady due to her ankle sprain, but we managed. Once she could eat, manage the pain without heavy meds, and move her bowels, she would be able to leave the hospital — so that became our objective. Within the hour, I quickly realized there was no way I was going to leave Mom’s side. The meds made her itchy and with her arms wrapped, she couldn’t even scratch her head. She also couldn’t feed herself, toilet herself, push the call button, or answer the constant stream of questions from the doctors. And although her pain seemed under control and she wasn’t combative, I could tell she was uncertain about the situation. Scott brought me a change of clothes and some toiletries and I settled in.
I took catnaps when Mom would sleep but those never lasted long, so I would pace the hall outside Mom’s room to stay awake. There was a gentleman a few rooms over who cried out frequently and always became combative with the nurses. I asked the charge nurse what was wrong with him and she told me he was an elderly man with dementia who had fallen and broke his collarbone. When I asked about his family, she said he didn’t have any just as another nurse walked by and said, “No wonder. No one wants to visit that mean man.” I thought, No wonder he was combative. He must have been scared and confused and unhappy about strangers poking him all the time. I asked if I could step in and visit him. The nurse said I could at my own risk. I walked into his room and quietly sat down next to the bed, all the while smiling but not saying a word. When he asked who I was, I just said my name was Jamie and I had come to visit him. I spoke quietly and calmly and asked him if it was okay that I was there. He looked at me for a while, seeming to assess whether he was going to yell at me, and finally said, “Yeah, you can stay.” I asked him his name and about the tattoo I saw on his arm. His name was Bill and he told me about his time in the Army. After a bit I could see he was getting tired, so I asked if I might shake his hand. He gave me his hand and I held it and thanked him for his service and for talking with me. He thanked me and asked if I could come back soon, and I promised I would. For the next two days, I would visit Bill (if he was awake) when Mom was sleeping. I am not sure if he remembered me from day to day, but he never yelled at me and we always ended our visit with a handshake. One of the nurses asked me why Bill never got combative with me. “I think it is just the way I approach him, I talk to him not at him,” I said, at which point she just rolled her eyes and walked away. It made me very sad.
By day three, Mom was doing pretty well. They had reduced the pain medication so she was a bit clearer, and her digestive track started to move. The doctors said they would release her, and we began to work with the discharge planner to set up PT and care. With her arms immobile, she would need 24/7 care, and they were recommending she go to a rehab facility. I called the executive director at her memory care facility and let them know what the situation was. The ED told me to bring her home instead. She assured me that they could get 24/7 care and then Mom would be able to rehab in her home with Lucy (her kitten) and with caregivers she was already familiar with. When I asked if insurance would cover it, she assured me it would. That was the best news my sleep-deprived brain had had in 4 days! A couple hours later we were in the car and heading back to Mom’s apartment both of us exhausted but in good spirits.