Waiting for Alzheimer's

Mama and Me Part 3-The Curve Ball

By the summer of 2007, I felt I had gotten to know Mom’s disease really well. I not only had learned what to expect in the various stages of Alzheimer’s through the research I had done, but I also had learned specifically how it was progressing in her and could basically predict what was coming next. She would spend months in a kind of plateau, when she wouldn’t seem to get any worse, and then all of a sudden she would take a big step down. I had even sent an email to my siblings in September of that year warning them another step down was due at any time, but this time, it might result in her entering the nursing home.

Dad and I had been on increasingly shaky ground when it came to caring for her. Instead of just assisting her, I had been fully bathing and dressing her by that time. She had been edging closer to incontinence, putting dirty toilet paper in the bathroom cabinet instead of in the toilet and frequently having accidents. So we had her wear Depends. On the emotional side, she had been nearly inconsolable. I was the mean lady who made her take a bath and her home was no longer recognizable. She had begun crying on a regular basis, begging to go home and saying her daddy would be worried and she would get into trouble. We soothed her as best as we could and tiptoed on in that delicate balance for months.

Dad and I had discussed when she should enter the nursing home a few different times, knowing the day was likely coming fairly soon. Dad had put her on the waiting list at our local home some time before and had called to check on her status after one of our discussions. She was at the top of the list and would be welcome at any time. But Dad said not yet, it’s not quite time yet, and I agreed. Less than a month after I had sent the email to my siblings, Mama took her next step down, and Alzheimer’s threw a nasty curve ball at us that none of us saw coming. She started having seizures. In all my research, I had never read one word about seizures being a possible part of Alzheimer’s. Everyone of us was saying the same thing: What the heck is going on?

My sister, Jo, who lived out of state at the time, was home visiting the first week of October that year. The morning she was due to leave, before the sun had even risen, I was awoken by a phone call from her. “Mom fell and hit her head, and she’s not conscious,” Jo said, her voice full of stress and adrenaline. “The ambulance is on its way. Get here as fast as you can.” “I’m on my way,” I replied and hung up the phone. I threw on some clothes, was out the door in fewer than five minutes and was at Mom and Dad’s house a minute or two after that, even arriving before the first-responding police officer.

Mom was lying on the kitchen floor, her untouched bowl of cereal on the table and Dad and Jo hovering over her. She was still not conscious and had loud, labored breathing that made a scary rasping noise. She also was beginning to get tinges of blue around her mouth. Jo said she had just been sitting Mom down to eat her breakfast when she suddenly fell backwards and hit the back of her head on the chair. Jo didn’t know how she had fallen. She said Mom had been seizing just after her fall but didn’t know if the head injury had caused the seizure or if a seizure had caused her to fall. The police officer arrived and shortly after, and so did the ambulance. Mom was slowly loaded with all necessary precaution when a head and possible neck injury are involved, her head and shoulders placed in an immobilizing brace. She had regained consciousness by the time they were carrying her out. She kept crying out and rubbing her hands on her face, trying to free herself from the brace.

We arrived at the hospital, where the nurse said seizures were indeed a fairly common part of Alzheimer’s, and I wondered how I could not have already known that. They monitored Mom for a few days and then sent her home. Dad also was able to get an anti-anxiety medication for her at this time, which helped her emotional issues to an extent, but suddenly her incontinence and anxiety were the least of our concerns. The safe ground on which we were caring for her grew shakier still. Some time later, I can’t remember exactly how long, I received another early-morning phone call. Dad said he had woken up in the middle of the night and saw Mom wasn’t in bed. He had gone looking for her and found her lying on the floor of the bathroom. She was conscious but disoriented, muddled and not speaking. Dad helped her up and walked her back to bed.

When I arrived shortly after his call that morning, she was still in bed; had glazed, staring eyes; and still was either unable or unwilling to speak. She seemed to understand what I was saying to her, however, because she vigorously shook her head no when I asked her if she wanted to try sitting up or if she wanted something to eat. I noticed her Depends were not pulled up all the way, so I began slowly rocking her from side to side as I tried to pull them up. She suddenly went into another seizure, this time biting down on her tongue so hard that blood began running out of her mouth. I called for Dad to call the ambulance, and once again she was whisked away to the hospital. This time during her stay, she tried to get out of bed at some point, went into another seizure and fell, badly injuring the side of her face and head.

Dad and I knew the time had come for her to move into the nursing home without having to talk about it. After approximately 10 years of fighting this disease, she now was to the point of needing 24/7 professional care, something we could not provide her at home. I at least was thankful that when it came to it, the decision was an easy one. But while the next step was obvious, I know it wasn’t easy for Dad. I think it was the most difficult thing he’d ever had to do in his life. He called the nursing home and made the arrangements, and just a few days before her 68th birthday, which was Oct. 28, 2007, she was transferred straight from the hospital to the place that would be her home for the next 8½ years.

A massive burden was lifted from my shoulders when she entered the nursing home, but a new, different kind of weight replaced it, a weight of guilt for leaving her where she did not want to be and of fear that she would not receive the loving care she had received at home. Mom did not know where we had taken her; she didn’t know it was a nursing home. She continued to say she needed to go home because her daddy would be worried. With a terrible heartache, Dad and I and a few of my siblings who could accompany us assured her we would return soon to take her home, but in the meantime she should try to make new friends and enjoy herself. She said OK and stared after us with innocent and slightly fearful, child-like eyes as we walked away from her and let the heavy and secured door of the dementia ward close behind us.

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