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Our Family's Battle With Dementia

December 5, 2016
edlerly woman's hands on walkerThis is a true story about real people in Greenville, South Carolina. To protect the medical privacy of the patient, certain identifying information was changed.  My mother was living alone in California after the death of my father and was doing fine until she started falling. Once. Twice. The third time it became obvious even to her that she could no longer live in her house. But there was more to it than just her loss of balance. Her behavior was changing. Mom was in a rehabilitative care facility recovering from a fall when she became confused about where she was. At times, she thought she was at home. She was having trouble with simple logic. She was paranoid. The immediate conclusion of several of my siblings was that she had dementia and would need to go into a nursing home. Another sister and I were rattled by the suddenness and severity of the conclusion. We had doubts. We both spoke to Mom regularly, me by phone and my sister in person because they lived in the same city. As my sister would say, Mom occasionally “slipped a gear” during  her conversations, but that’s all. Years earlier I’d read that a common misconception is that dementia is a disease. It isn’t. Dementia is simply a catch-all term covering any number of conditions that can cause memory loss, personality change and inability to reason.  A person who has Alzheimer’s has dementia but a person showing signs of dementia does not necessarily have Alzheimer’s, a leading cause. Other possible causes of dementia are vascular problems, injury, stroke, brain tumor and other conditions and diseases. When symptoms of dementia occur, the first step is to get a diagnosis. None of my siblings in California were able and willing to take my mother in and care for her, so my husband and I brought her to our home here in Greenville, South Carolina to avoid any more talk of a nursing home until we could get answers. It was a difficult cross-country trip because Mom became ill and we even had to stop at an emergency room on the way. A urinary tract infection was thought possible, and a prescription was written and filled. Once we arrived in Greenville, the plan was to have Mom medically evaluated. Before we could even get a doctor appointment, her hip and leg pain became unbearable. She was taken by ambulance and hospitalized. Doctors there told us her case was “complicated” and that she had “a lot of things going on”. Among those things were, low-sodium, a urinary tract infection, and the excruciating hip pain. They detected some damage to small blood vessels in her brain, perhaps from her high blood pressure, or maybe from one of the falls. Doctors were pessimistic about Mom’s mental state. I asked if unwinding her physical problems might improve her cognitive functions.  I told them that I read that it sometimes happens that way. They were patronizing and negative. After a two-week hospitalization, Mom moved back in with us. She sobbed uncontrollably for hours at a time and didn't know why. She improved, then got worse, and was again hospitalized, this time because of extreme delirium. At the hospital, Mom demanded to know why we were holding her in the parking garage and insisted we tell her who else was in on the plot. She was at her worst in the evening. The doctors called this pattern “sundowning”. It’s common and means the dementia symptoms get worse late in the day. Mom would pull at the various tubes and electronics monitoring her and try to get out of bed. My husband and I knew that if we left, the nurses would be forced to restrain her so we stayed with her 24 hours a day, alternating 8-12 hour shifts. A week later, she was well enough to be discharged. Over the next several months at our home, her physical condition improved significantly, but not her mind. She could get around, but she paced constantly. She argued. She frantically called friends and family complaining about us, who she believed were her captors. We knew we didn’t dare leave her alone, but even if we had considered it, her doctors forbid it and sought repeated assurances that we would not leave her alone. Not only did she feel like a prisoner but so did we. We needed help. I was already familiar with the people at Brightstar Care so we called them first. Their Director of Nursing visited us in our home and said that despite her dementia, Mom should need no more than an assisted living facility at most and was not even a candidate for a nursing home. Their nurse also said Mom could continue to live with us and Brightstar could provide in-home care to give us relief and the ability to work. We went ahead with this plan and it was a welcome relief. Over the coming months, the Brightstar Care Greenville / Spartanburg staff accommodated our ever-changing schedule, adjusting for Mom’s doctor appointments and other life situations. With the help of geriatric medical specialists, therapy and medications, Mom’s mind began to clear and after a while, she was no longer a dementia patient. Mom could still be living with us but there was nothing for her to do. She needed to be around other people. She now lives in an assisted living facility in Greenville and we see her several times a week. Her only remaining symptom is  very mild cognitive impairment. She solves puzzles to pass the time, enjoys spending time with her friends and makes her own care decisions. Her memory is good. The only memories she lost are traumatic memories. The cross-country drive. The ambulance ride. The hospitalizations. It would be a mistake to think that our experience is typical, but there is a lesson anyone can use. If a loved one shows signs of dementia, seek medical help to determine the cause. Dementia is not a specific diagnosis. Are you looking for answers? Brightstar Care of Greenville and Spartanburg can help you assess the needs of a loved one and help in any way possible. We are your local experts for in-home care, including skilled care. We can help you understand senior health problems including Alzheimer’s or other forms of dementia. Call our Greenville SC office 864-599-0452