Saturday, April 18, 2015

Saving Dad: A Daughter's Story, Chapter 11

"I think words will come easily because the memories are vivid. But, disquieting images flood my mind. A chaos of colors, sounds, and odors revive a half-forgotten place, a grim repository of human suffering without compassion or hope." - Elizabeth Martin, 2015

September, 2009

Dad's transfer from North Fulton Hospital to Emory Geriatric Center's Budd Terrace left Mom emotionally stranded. Her need to be with him, to protect him from harm, fueled a constant worry about how to get rides to and from the hospital and what she might find when she got there.

The 45-minute drive to Budd Terrace was far outside the range of Chambrel's transportation service, and although there was an extra-fee option in case of emergency, Chambrel could not spare a vehicle for three hours a day to drop Mom off at Budd Terrace every morning and pick her up every evening, which is what she wanted. Both my brothers worked. At that time, Jim had a three-hour daily commute into the city, and Tim was managing a project in Florida.

There was no public transportation accessible from Chambrel, and no taxi service in the area. Limosines were prohibitively expensive, and staying in a hotel indefinitely, with the cost of meals and twice-daily taxi service, on top of paying for the cottage and the house, was out of the question.

Still, Mom insisted she had to be with Dad all day, every day. My brothers and I did all we could, but some days we failed to do what was needed. Our conversations were filled with frustration and guilt.

I thought my arrival in Atlanta would help. Even though I could not drive Mom back and forth to Budd Terrace for medical reasons of my own, I could arrange transportation every day, or at least explain why it was not possible. And, I could comfort Mom and figure out what my brothers and I needed to do next. That was the plan. But by the time I arrived, Mom was so stressed about the situation, nothing I did seemed useful to her. "I can do that myself," she would say. Or, "I'm used to doing things myself." She had slipped behind the wall that so often separated her and Dad from me and my brothers, and from the rest of the world. She needed help, but all our efforts seemed to count for nothing - unless we could reunite her with Dad, Mom would have no peace.

The first time I visited Budd Terrace, Dad was sitting in a wheelchair parked in a large common room with a few other patients, most in wheelchairs, and a handful of guests like Mom and me, standing around looking uncomfortable. There were several rectangular wood tables in the area and a few heavy, mismatched wooden chairs. All the furniture was sticky to the touch. The paint and linoleum were dingy and institutional. The air smelled of urine mixed with disinfectant.

An L-shaped counter in the corner of the room furtherest from the tables and chairs, marked the nurses' station. Most of the time, no nurses were visible; they gathered inside a small office behind the counter, out of sight of patients and guests, unless someone walked up to the counter or called out for help from the main room.

I found Dad slumped over in his wheelchair. His trousers were stained and several sizes too large. A button was missing from his shirt. He had lost weight. His skin tone was gray. Medications had deadened his spirit. When he finally lifted his head and opened his eyes to look at me, I hardly recognized him, nor him me. Mom was right to be worried.

When I asked which drugs Dad was getting, a nurse said Seroquel and Ativan along with his heart medication. I looked up both drugs and voiced concerns about the use of Seroquel. I thought it might be the cause of his twitching, which I had never seen before. Eventually, at the family's insistance, staff stopped giving him Seroquel. The doctor ordered Risperdal instead. The twitching stopped, but Dad's agitation increased.

I asked about the progress of his hip rehabilitation. A nurse said they had been taking him to physical therapy, but he was always asleep during the appointments - someone would wheel him upstairs, leave him in the hallway sleeping in his wheelchair, then bring him back after the appointment - so he was making no progress. The whole reason for being there was to get physical therapy. "Couldn't they schedule him at a different time of day?" I asked. The nurse didn't know.

When Dad was awake, he always tried to get out of his wheelchair and walk. Attendants would tell him to sit down, over and over. When he refused, they would take his arm and push him back into the wheelchair, repeating, "Sit down." The nurse told me it wasn't safe for him to stand, so I did what the attendants did, not knowing what else to do. "Sit down, Dad." Sometimes he would grab my arm and dig his nails into my skin. One of the nurses, who had always been arrogant when I asked questions, seemed to enjoy my anxious reaction. She would watch me struggle to calm Dad and smile disingenuously. "Oh, do you need help?"

None of the staff welcomed visitors. My questions were always treated like interruptions in a daily routine that ran like a closed system.

Spending hours on end at Budd Terrace, I came to know most of the patients on Dad's floor. I best remember a small, silent woman who spent each day sitting and watching for her friend. Her hair was never combed; her dressing gown was hospital  issue. Her body made a fragile C-shape in the too-large wooden chairs. She seemed to recognize me sometimes, but when I spoke to her she never responded. Her eyes were unchanging - soulful and sweet. I felt as if she were seeing everything from a distance or through a veil of thoughts she would never articulate. Her friend was a stooped, elderly woman with long grey hair. She would enter the common room from one of the adjacent halls, touching the walls to guide her way. The younger woman would get up and take her blind friend by the hand. Then, the two of them would walk the halls together, staying close to the walls, whispering to each other. Their friendship was the only comforting sight I saw in that strange, cold place where time stood still.

During the first week of my visits, Mom introduced me to a wheelchair patient, a lady about my age who had broken her ankle and was in for rehabilitation - like Dad. The lady's children worked, and could only visit in the evenings. But rather than leave their mother unattended, the children had hired a companion to stay by her side 24 hours a day, like a bodyguard, to be sure she got what she needed. The lady had nothing good to say about the care at Budd Terrace. If she depended on the nurses, she believed she would never get well. We briefly considered hiring a companion for Dad, but at a minimum of $360.00 a day for a "sitter," it was not possible.

Most of the patients were asleep in their wheelchairs during my visits, no matter what time of day. Mom would wake Dad up as best she could and wheel him around, talking to him, trying to keep him alert to his surroundings. But, it was difficult. He was always groggy, and seldom spoke except to say, "no." His overall health and ability to communicate had declined so much and so quickly, I couldn't figure out what to do next. The situation seemed hopeless.

Attendants sometimes dressed Dad in other people's clothes and once tried to give him another patient's dentures. They lost his hearing aid; it was never found. We knew Dad was getting no physical therapy, and his medication doses were increasing, because his agitation was increasing. The weight loss continued. He was dying in front of our eyes.

One afternoon when Mom and I were at Chambrel, we received an emergency call from Budd Terrace. Dad had been rocking his wheelchair from side to side. It had turned over on him. The caller said he was bruised, but otherwise uninjured. Mom was impossible to calm. She insisted we get to Budd Terrace right away. I tried everyone and everything I could to get a ride or a car, but I failed. Finally, I called Jim as a last resort, knowing how difficult it would be for him to help, but having exhausted every other possibility. I told him Mom was a wreck, but he said "no." When I insisted, he hung up on me. We didn't speak again for two years.

Mom didn't get to Budd Terrace that night. The next day during our visit, I asked to see the head nurse to discuss Dad's condition. She calmly explained that Dad had Alzheimer's, and that he, like others with the disease, suffered from episodes of "sundowning," which accounted for his agitation. It was the fault of the disease, not the medication. She said he would not get better and that I would have to find a way to accept his condition.

I researched Alzheimer's, Seroquel, Risperdal, Ativan, Budd Terrace, hip replacements, brain damage, dementia - everything - anything that might help me understand what was happening to Dad. I did not accept the nurse's bleak outlook.

One thing was certain. We had to get Dad out of Budd Terrace, or he would be dead soon.

Photo: Dad at Emory Hospital's Budd Terrace on October 4, 2009

Tuesday, March 24, 2015

Saving Dad: A Daughter's Story, Chapter 10

I was in Jacksonville, between visits, when Dad fell. I don't remember which of my brothers called to give me the news. The voice on the phone had a flat affect.
"Dad's in the hospital. He had emergency hip surgery."
"North Fulton."
"Oh no. What happened?"
"I'm not sure. Mom just said he fell and couldn't get up, so she called 911."
"What did the doctor say?"
"I haven't seen a doctor."
"I've never heard of emergency hip surgery. Have you?"
"Did you see X-rays?"
"I haven't seen anything. And Mom can't remember anything."
"Is he OK?"
"I don't know. He got through the surgery, but he won't be going home with Mom."
Silence. There was nothing more to say. We could only guess what lay ahead.
"Let me know what you find out."
That was it. We said goodbye. I stood staring at the wall across from the desk where I had picked up the phone call. I had no idea what to do. I dreaded going to Atlanta.

When I asked Mom about the fall, she said Dad had been walking the dog in the yard, as usual. She had looked out through the window to check on him and saw him sitting in the driveway next to the curbstone with Gabriel. Dad was smiling. She ran outside and told him to get up. "I can't," he said. He wasn't in pain or upset, he just couldn't get up. When she tried to help him, he still couldn't stand, so she called 911.

Mom didn't remember anything about what happened after Dad was transported to the ER. All she could say about the surgery was, "They looked at him and they went ahead and did it."

Years later, Jim told me Dad broke with reality in the hospital. We never learned why. The surgery was over by the time my brothers arrived. Jim said Dad was in his room staring into space, babbling unintelligibly, and very emotional. He told my brothers they looked much older than the last time he saw them. He began explaining he had seen a lot of action lately and knew they had too. Jim and Tim didn't understand what he was talking about, but they played along.
"Yeah, we saw some action all right."
Eventually, they concluded Dad thought they were two of his five brothers. All had served their country during WWII. Jim bore a close family resemblance to our Uncle Grover, who had been wounded and hospitalized; and Tim resembled our Uncle Roy, especially in temperament. Dad returned to the present after a while, but he would seem to revisit the past many times in months to come.

The doctor said it wasn't unusual for someone with dementia to behave that way - to get lost in time and place - after a traumatic experience; we shouldn't worry. But, we did.

The hospital told Mom they could only keep Dad for a few days. After the surgery, he couldn't walk; and he needed rehabilitation. The dementia would complicate his recovery. He had to go from the hospital to a facility with memory care and rehabilitation services. Chambrel offered assisted living and limited rehabilitation, but no skilled nursing or memory care.

My brothers looked for a care facility within a few miles of the cottage so Chambrel transportation could drive Mom back and forth every day to visit Dad. She could no longer drive because of vision loss due to glaucoma, and she would want - no, demand - to be with Dad every waking moment. They had become inseparable.

A few days after the surgery, North Fulton Hospital transferred Dad to Emory Hospital, a 45-minute drive from Chambrel. We had no choice of facilities. Emory was the only place in the area that could meet his needs.

Mom called upon Nan, my brothers, her friends, off-duty workers from Chambrel, and anyone else who was willing to drive her to and from Emory to be with Dad. She called my brothers and me several times a day, deeply concerned about his condition: how the staff treated him, his reaction to sedatives the doctors were prescribing, the fact that he was getting no rehabilitation, the nurses' dismissive attitudes toward his increasingly agitated behavior, and her transportation problems. Mom was coming apart, emotionally.

I flew to Atlanta.

Saturday, February 21, 2015

Saving Dad: A Daughter's Story, Chapter 9

Flying from Jacksonville to Atlanta became routine. One week a month I lived with my parents and Gabriel the Dog, doing what they did; learning Mom's routine, getting to know how things worked at Chambrel, and trying to fill in the gaps.

The first few months I rented a car, thinking I would take Mom shopping and drive her to and from the old house, to move whatever she and Dad might need for the cottage. But, I soon realized she couldn't leave Dad at home alone or with a caregiver, and it was difficult to take him anywhere; he didn't like being in unfamiliar places. So, I stayed at the cottage with him while Nan drove Mom wherever she needed to go.

Days together were long and exhausting. Mom had to monitor Dad 24 hours a day. Although he could walk the dog, enjoy dinner in Chambrel's dining room, and carry on limited conversations, he was always hyper-alert to Mom's presence. He seemed to depend on her for cues. Any separation, no matter how brief, caused him visible anxiety that quickly escalated to confusion then anger. I learned to delay the onset of Dad's anxiety, but it took all my energy to keep him from panicking when Mom was out of sight for more than a few minutes.

paid very close attention whenever Dad made any effort to communicate, verbally or non-verbally. I learned to understand his word substitutions by watching the look in his eyes; it would change from worried to relieved when I echoed his thoughts. His favorite placeholder-word was "unit," which I thought an excellent choice. After he realized I understood "unit," he talked more. I treasured those conversations.

Every morning, I went to the Chambrel dining room to pick up coffee and breakfast for the three of us, or for Mom and me on days when Dad was having "Wake Up" service from Chambrel's personalized assisted living menu, in which case Dad's breakfast was delivered as part of the service.

Mom didn't use the personalized services much, she said, because of the added cost; but also, because she didn't like so many different people in and out of the cottage. To Dad, the housekeepers and caregivers were unwanted strangers. He didn't understand why they came and went. He hadn't invited them and he didn't want them in his house.

Their comings and goings made me a little uneasy too. Mom had to explain every detail of what she wanted done, to every person who showed up. There was no way to arrange for the same people. Giving instructions and answering questions meant Mom didn't get respite time by hiring helpers; she just got to do a different job. After observing the situation for several months, I concluded my parents were giving up a lot of privacy, and spending a lot of money, for very little help. But, what was the alternative?

Mom still talked about moving back to the old house, but after three months at Chambrel, she decided to sign a one-year lease and settle in. She and Nan moved all the files, including tax information and medical records, to the cottage.  An avalanche of Medicare and insurance paperwork was piling in because of the accident. The number of bills had doubled because of the move. Now, the mail had to be picked up from two locations instead of one; everything for the old house from the post office box; all the new Chambrel bills for rent, utilities, and caregiver services, from an assigned mailbox in Chambrel's main building. Handling mail was half a day's work each week. I offered to help with the paperwork.

After signing the new lease, Mom wanted all her files and valuables at the cottage. She and Nan moved what was left at the old house, and I asked Jim to deliver whatever paperwork he had along with the strongbox Mom had asked him to keep during the move. Jim seemed reluctant to bring things over; I had to ask several times. Finally after I lost patience during a phone conversation, he hung up on me. Late that same night, he brought everything to the cottage. I knew he was upset, because he came and went without saying a word. I was tired and frustrated too. "So be it," I thought. We didn't speak for several months.

In my mind, everything I was doing for Mom and Dad must be saving my brothers a huge amount of time and effort. It was my gift to them. I was spending an average of nine days a month working on our parents' behalf; seven days living at Chambrel, and two more at home in Jacksonville making phone calls, writing letters, and doing research for Mom on a myriad of subjects.

I didn't know my deeper involvement in our parents' lives actually complicated matters for my brothers. Mom wanted their opinions on everything we discussed, in addition to whatever else she called them for, mostly having to do with covering chores at the old house. I think her daily phone calls were Mom's way of treating us equally. She had no idea of the toll they were taking. With no end in sight, family tensions were mounting. No matter what my brothers and I did, no matter how hard we tried, we could never make things right for our parents. But every day, we tried - desperately.

Months passed. Mom became brittle and demanding. None of us could see how close she was to the breaking point. Her focus was on Dad's needs, as always, to the exclusion of all others', especially her own.

Friday, January 2, 2015

Saving Dad: A Daughter's Story, Chapter 8

After I began writing this book in August 2014, Mom agreed to share why she changed her mind so suddenly about looking at assisted living options in 2008. "I'll tell you now, because it might help other people going through this," she said. 

One afternoon, Mom was sitting at the kitchen table when she heard Dad come in from the garage where he had been working. She turned to see him lift a metal folding chair above his head and move toward her. Surprised, and frightened by the empty look his eyes ("he looked like someone else"), she jumped up from the table shouting, "What do you think you're doing? Put that down or I'll see you in jail!" Mom so seldom raised her voice that Dad stopped, still holding the chair high in the air. "I mean what I said." She repeated, "Put that chair down or I'll see you in jail!" Mom remembers Dad looking very sad "like a little boy."

Well, you know I can't help it," he said. At that moment, all Mom wanted to do was comfort him, hug him and tell him everything would be alright, but instinct cautioned her to keep her distance. "Well, you'd better help it!" she warned. He put the chair down as suddenly as he had picked it up and walked out of the room as though nothing had happened. "That's when I knew something was wrong," she said, "really wrong."

Mom didn't tell a soul about the incident. It would be three years before I heard anything about Dad's violent behavior, and not from Mom. In 2008, my brothers and I didn't know or suspect a thing. We were just grateful our parents had finally agreed to look at senior living communities in the area.

Of all the places Jim and Tim previewed, Chambrel at Roswell, a Brookdale community, seemed the best choice. It offered both independent living and personalized assisted living, which meant Mom and Dad could live independently, and if needed, select from a menu of personalized fee-for-service options, such as assistance with medication or getting dressed and undressed each day.

Mom liked Chambrel's Magnolia Cottage design. The unit she chose was a sunny, 1,057 square-foot, two-bedroom home with a one-car garage, covered front entry, and back patio area. High ceilings, quiet wooded views from large windows and a sliding glass door gave the feeling of living in a single-family home, even though the cottage was one half of a duplex.

Chambrel's independent living rental fee included security (a home and away monitor), weekly cleaning service with linen change, laundry service for sheets and towels, and two meals daily - continental breakfast and lunch or dinner in Chambrel's elegant community dining room. In addition, Chambrel offered free local transportation by shared bus, and free on-site enrichment programs for residents. And, it was pet friendly. Perfect!

My brother Jim convinced Mom and Dad to try Chambrel. They could treat it like a vacation resort, he said. Their house in Roswell was only one mile from the cottage. They could move back to their house if they didn't like living in Chambrel. Mom was happy with the idea. Dad was a little confused, but didn't mind a change as long as Mom was with him. 

Under Mom's direction, my youngest brother Tim and his son Taylor moved enough furniture from the house to make the cottage comfortable. Nan moved the housewares.  I was anxious to visit Mom and Dad to see first-hand how they were settling in. 
It had been several months since my last visit to their house, and I had recently received a call from one of Mom's friends who let me know in no uncertain terms: "They need help!" I thought I had been helping.

When I told Mom I wanted to come for a visit, she said that would be good, because she had a medical problem and needed surgery. She had been putting off treatment because of Dad, but couldn't anymore. Of two possible procedures, she said she was going to have the one that would get her in and out of the hospital, same day. But, she would need someone to stay with Dad, and he didn't do well with Nan. So, would I come and take care of him? Mom would hire a caregiver too - Dad wouldn't allow his daughter to dress or toilet him - but I needed to be there to watch the caregiver, Mom said, to be sure Dad got his medications - and just in case the caregiver didn't show up or didn't know what to do; or in case Dad didn't like her or got upset and started "acting up." And, Gabriel the Dog had to be taken care of - he needed his walks. Dad could walk him, but I had to be sure they stayed in the yard and didn't wander off, and so on.

Mom voiced dozens of cautions. Overwhelmed, I made a list of her specific instructions for the caregiver and another for myself, to be sure I got everything right. All this for day surgery? I promised to plan a week-long stay, to be sure Mom had coverage following the surgery. In my experience, nobody goes under anesthesia for a procedure and then back to work same day. And caring for Dad was work. I told Mom it would take more than a strong will to heal.

When I arrived at Chambrel, I was pleased to see my parents so happy. Dad's conversations were difficult to follow, because he substituted words like "unit" for any number of other words he couldn't recall, but I understood what he was communicating. He had lost weight, making him look fragile to my eyes. But, he was physically capable of walking the dog in the yard, and of walking less than a quarter mile each way to and from the building where meals were served.

I enjoyed being with Dad and felt sure I could do everything Mom wanted while she was away, until the first time she left us alone to go out with Nan for groceries (Dad usually went with them). As soon as he realized Mom was not in the cottage, he panicked. He stood at the front screen door and watched for her, repeating, "Where is she? Where is she?!" I was able to coax him into a conversation and Gabriel helped distract him, but Dad's anxiety level was very high, and he was easily agitated.

Mom and Nan were gone for less than an hour. As soon as they returned, Dad was calm again; but, I was worried by the thought of getting through twelve hours with him, after seeing the change in his behavior when Mom was out of sight. I realized that even when she was in the bedroom or the bathroom, he needed to know she was close by, or he became anxious.

I asked Mom about the caregiver who would be staying with us on the day of her surgery, and was concerned to hear she had hired the girlfriend of the next-door neighbor's son, a student training to become a nursing assistant or somesuch; someone she had never met. I asked why she didn't hire someone from Chambrel. "They cost too much," she said.

On the day of the surgery, Mom left early with Nan to go to the hospital. The student-caregiver was late and lasted only one hour. She didn't want to administer Dad's meds and seemed afraid to toilet him or even go near him. I didn't understand what was happening. Finally, I paid her for time spent and sent her packing.

Dad was glad to see the nervous stranger leave his house. He insisted he didn't need help; he could toilet himself (and he did very well at it, as far as I knew). I explained that Mom had gone to the doctor with Nan and that I wanted to stay and visit with him, if that was OK. He agreed. We got through the day. Mom returned home around dinnertime. I learned that Chambel had a meal delivery option for a six-dollar fee, and we took advantage of it - a good deal in case of bad weather or in this case, a physical incapacity.

Mom seemed to be in a lot of pain the first few nights and slept fitfully. I hardly slept at all, listening for her and Dad - he often got up and walked around during the night. I could hear Mom crying out in her sleep, and she had trouble getting out of bed to go to the bathroom. Years later, both of us would learn that the procedure she had was not the one she believed the doctor would be doing. In fact, he had performed a partial hystorectomy without telling her or even noting it in her medical records.

I helped my parents as best I could. Nan was still part of Mom's team. And, I made sure Mom knew she should hire any other help she needed through Chambrel when I wasn't there. She couldn't afford the risk of having untrained or otherwise unreliable people show up from outside sources.

By the end of the week, Mom said she felt fine, and I had a much clearer picture of the situation. Dad required supervision 24 hours a day. Mom definitely needed some personalized care options from Chambrel's assisted living menu. I needed to help my brother Jim get our parents' financial affairs in order. And, with Mom's agreement, we needed to get their house on the market. There was no way my parents could return to fully independent living. Mom objected to selling the house. "What if we need to move back there?"

I planned to stay with my parents one week out of every month, until things were running smoothly.

Friday, November 28, 2014

Saving Dad: A Daughter's Story, Chapter 7

After the accident, Mom told me the car that hit them had been speeding; the driver was trying to beat the light. Trees and overgrown shrubs on the corner had obstructed Dad's view, so he couldn't see the oncoming car until he was directly in its path. There was no way he could have avoided the crash.

Mom remembered hearing herself scream. The car spun round and round and landed in a ditch. She didn't recall anything about a telephone pole. Dad was limping when he climbed out of the driver side. Mom was pinned in on the passenger side. Dad's legs were hurt; he had to lean against the car for support. He kept repeating, "I'm sorry," over and over. Mom kept reassuring him. "Don't worry. It's all right. I'm OK. " And, by some miracle, so was their dog.

At the time of impact, Mom was holding Gabriel, a feisty, faithful, fearlessly protective Shih Tsu named after the Archangel; a seven-pound, barking ball of white fluff who had been my parents' treasured companion for five years. When the passenger-side airbag deployed, he was just below it. Gabriel was a tough little dog, and I thanked God when I heard he had survived the wreck uninjured. He played an important role in my parents' recovery, and in many of the life-changing events that followed.

Although the Toyota had been totalled, my parents didn't file an insurance claim. When I asked why, Mom said my brother Jim had turned in Dad's driver's license at the police station shortly after the accident, putting an end to the matter. I didn't know what turning in a license had to do with filing - or not filing - a claim, but I was relieved Dad wouldn't be driving anymore.

My parents kept a vintage Oldsmobile, the Toyota's predecessor, stored in the garage. In spite of its age and high mileage, the car was in good condition, though I recall driving it once in the mid-1990's, more than ten years earlier, and having a sense that it was supposed to have power steering but didn't anymore. Turning the wheel took so much effort, it was like driving on partially-inflated tires. Still, the engine was strong and the ride was smooth. Age hadn't changed that.

Mom kept the car keys carefully hidden where only she could find them in case of emergency. She didn't tell Dad his driver's license was no longer valid. Instead, she found ways to explain why they didn't need to drive anymore. Dad seemed happy to putter around the house, as long as Mom stayed home too. The first and only time she went shopping with a friend, Dad somehow found the keys to the Oldsmobile and drove around until he spotted the friend's car in a parking lot. He stopped the Olds outside the store and waited for Mom. When he saw her, he got out. "I couldn't find you," he said. "I didn't know where you were." He was angry and disoriented. Mom never left him alone again.

For five months, from February through July of 2008, my parents were housebound. They didn't want help from anyone except family members. My repeated pleas for them to take advantage of the local senior center's services continued to fall on deaf ears, even though I explained how the center's transportation options, meal programs, medical services, and daily activities could keep Mom and Dad physically active, and aid in their recovery. It was beyond my comprehension that anyone could choose to remain home alone when there was so much available only a mile away.

Jim and Tim picked up fresh food from the grocery store, prescriptions from the pharmacy, and mail from the post office as often as possible, but both were under considerable stress because of their jobs, business travel, and other family obligations. Schwann's food service continued to stock the freezer and refrigerator regularly, and I continued to send whatever dry and canned goods I could find through Amazon. But, it wasn't enough.

My parents also needed to get to doctor appointments. These were by far the hardest for my brothers to cover, because they were always scheduled during the work day, so my sisters-in-law became involved. All of us felt guilty, as if we were responsible for making things right but couldn't. Family tensions were rising.

Finally, Mom decided to hire a part-time helper, a lady she met through the church. Nan had retired from a substantial business career to take care of her husband when he was diagnosed with late-stage brain cancer. After his death, Nan didn't want to return to corporate life. Instead, she chose to become one of those rare individuals committed to easing the burdens of others.

Nan drove Mom and Dad to their doctor appointments; kept Dad company in the car while Mom bought groceries; picked up the mail at the post office; and helped with the housekeeping - all under Mom's direction and at Mom's convenience. Nan was a saint. I think the only thing she didn't do was manage the family finances. Mom did that.

Before the accident, Dad had never allowed Mom a voice in money matters. His control over the purse strings was absolute. No-one, including my brothers and I, had ever been privy to anything whatsoever about our parents' finances. After the accident, Mom did the banking and wrote all the checks. She asked my brother Jim to prepare the income tax returns. He managed do the job, but said it was a battle to get even the minimum information needed to complete a short form. Mom was reluctant to share any financial details.

Month after month, Mom pretended all was well. We knew it wasn't. My relationship with her became an endless, exhausting, emotional tug of war with no end in sight. Then suddenly, in August 2008, for reasons known only to her, Mom agreed to look at assisted living facilities.

Wednesday, November 19, 2014

Saving Dad: A Daughter's Story, Chapter 6

When the phone rang, I was in a Boston hotel recovering from outpatient surgery. It was Jim. "Mom and Dad were in an accident," he said. "Their car was totalled." I sat bolt upright in bed. "What happened?"

Our parents' Toyota had been hit on the passenger side by an oncoming vehicle traveling at full speed. Their car spun twenty to thirty feet out of the intersection and hit a telephone pole. The impact deployed driver and passenger-side airbags.

Paramedics pulled Mom out of the wreck and were preparing to transport her to the nearest hospital. Dad was confused and belligerent, trying to stop the paramedics, insisting Mom was fine. Mom was strapped to a stretcher, wearing a neck brace. An officer told Jim they would have to handcuff Dad if he wouldn't cooperate.

Although Dad appeared uninjured, his head had hit the steering wheel airbag with horrific force; a one-inch long crease ran vertically down the center of his forehead. Months later Mom would say: "The accident knocked Dad's memory away."

Jim managed to distract Dad while paramedics lifted Mom's stretcher into the ambulance. Then, he convinced Dad to ride up front with the driver to the emergency room. "I don't know why we need to do all this," Dad said. Are you coming?"

Jim ran back to his car and drove to the hospital five minutes away. Tim met him there. What followed was a days-long nightmare for my parents, and my brothers.

Mom had neck and shoulder pain, and a cracked sternum. Dad had a possible concussion. Both were badly bruised and shaken. While Jim filled out the necessary paperwork, Dad argued, "I don't know why we need to do all this!"

After examinations and x-rays, Mom was admitted to the hospital for further treatment; Dad was released, but wouldn't leave without Mom. Staff told Jim if he couldn't do something about Dad, they would have to restrain him. "He was like a totally different person," Jim said. "He didn't realize he had been in a wreck." 

Anxious and angry, Dad found Mom's room. She was sitting in a chair, resting. He rushed in and lifted the mattress off the bed onto the floor. "We're taking this with us," he said. "We've paid for it!" Mom tried to calm him, but Dad wasn't listening. He rushed toward her. "Get up! You're fine. We've got to get out of here." He started pulling out her IV.

Suddenly, Dad felt someone grab his wrist. It was Jim. "The nurse can do that," Jim said. "If you want to leave, we'd better go downstairs and check Mom out." Dad looked tired and confused. "OK," he said. "Let's do that."

Tim was standing outside the door with two hospital security officers. As Jim and Dad passed by, one of the officers asked, "Can you handle this?" Jim said yes. Tim and the officers followed them downstairs. The hospital admitted Dad for observation.

Jim and Tim kept watch in Mom's room, taking shifts to provide twenty-four hour coverage. Meanwhile, Dad's doctor ordered him a sedative. But, it wasn't effective.

Later that night, Jim saw Dad walking down one of the hospital corridors heading toward an exit.
"Where are you going?"
"I've had enough!"
He looked at his oldest son, but didn't recognize him. Suddenly, Dad pulled back his fist to punch Jim in the face. "Go ahead. Hit me," Jim said. "They'll never let you out of here."

Those words seemed to startle Dad; he turned and walked back to his room as if nothing had happened. But, the encounter shook Jim to his core. He had come face to face with dementia.

Because Dad continued to be combative, doctors ordered restraints and more sedatives. Dad fought to escape for two days. Jim, Tim, and their wives took turns sitting with him and Mom.

None of us had ever seen the effects of delirium, and no-one at the hospital talked with my brothers about Dad's mental state. Everyone was focused on controlling his behavior.

After three days, doctors were ready to discharge both patients. Hospital staff called Jim to pick them up. Dad was still confused and agitated. Doctors advised continuing sedatives at home, and staff offered a few brochures about home care services. "These might help."

Jim was incredulous. He insisted the hospital keep Dad for a few more days. The family needed time to figure out how to care for him. No-one understood what was wrong, and sedatives weren't a solution.

When Mom was discharged, she went to stay at Tim's house. Because of her injuries, she couldn't safely care for herself. But, she continually insisted on going home.

After three days, and against his better judgement, Tim took Mom back to her house. That same day, Dad was released from the hospital and went home to Mom. My brothers planned to support our parents' needs by making frequent "house calls."

Jim started looking at assisted living facilities again. But, everything would take time. Exhausted and thoroughly frustrated, he called me. "You have to get down here," he said. "We need help." I had been on the phone with Jim and Tim - and Mom - countless times during the crisis. Now, both our parents were back home, and Mom was dead set on staying there. She wouldn't even discuss assisted living.

Short of becoming my parents' live-in caregiver, which was not an option, I didn't believe my presence in Atlanta would help. And, I told Jim so. From Mom's point of view, my brothers could provide occasional in-home support, and Mom had friends who could help too, she said - if she needed them.

In subsequent weeks, my brothers and I engaged in what seemed like endless debates about what to do next. In reality, there was nothing more we could do. Until Mom was ready to make a change, we were fighting a losing battle.

Tim understood my decision not to travel to Atlanta, but Jim was angry. He had asked for my help in time of crisis, and I had refused. A bond of trust had broken between us.

Saturday, November 8, 2014

Saving Dad: A Daughter's Story, Chapter 5

Although Mom and Dad remained fiercely independent, my brothers and I continued to talk, among ourselves, about ways we might help them. In mid-2007, our biggest concern was Dad's paranoia. "Trouble with the neighbor" seemed to be causing the most anxiety, so Tim decided to visit the man next door.

The neighbor was an independent long-haul trucker, so whenever Tim visited Mom and Dad, he kept an eye out for the neighbor's rig. One day he saw it parked out front. After saying goodbye to our parents, Tim got into his pickup truck and drove away, then doubled back and parked in the neighbor's driveway. He knocked on the door and introduced himself to the lady who answered, the trucker's wife. She called her burly husband; Tim repeated his introduction. The conversation was short but productive. Tim explained that Dad wasn't well and asked the trucker if he could try to avoid or even ignore Dad, if they happened to be outside at the same time. The neighbor vented anger and frustration over past encounters - Dad had a sharp tongue - but in the end, he agreed to forgive and forget.

Tim told Mom the good news. Again, we hoped she would take down the "For Sale by Owner" sign, but relieving her anxiety about the neighbor didn't cure Dad's paranoia. The sign stayed up.

As summer changed to fall, Dad's confusion deepened. On one occasion, Mom called Tim to help repair the riding lawnmower. In the past, father and son had enjoyed fixing engines together. Dad explained the problem to Tim.
"It won't start."
"Does it have gas?"
"Yes. I put some in."
"Where did you put it in?"
"Right here."
Dad pointed to the oil fill area.
"I don't think we're going to get it started today, Dad."

Years later, Mom told me Dad once confused a bottle of motor oil with a bottle of drinking water. She saw him lift the can to his lips and screamed, "Don't drink that!" Dad took a mouthful anyway, then spit the oil out and argued that he hadn't swallowed any. Mom insisted he come in from the garage and rinse his mouth out. He protested, but did what she said. It was a terrifying moment for Mom, but she never said a word about it to anyone.

On another occasion, when my brother Jim visited, Dad took him into the garage to help find a missing tool. Jim was dismayed to see a mishmash of plastic bins, cardboard boxes, garden tools, and miscellaneous equipment. Eventually, Jim found the lost tool in a cardboard box.
"Dad, why don't you put the tool into your toolbox?"
"That's a good idea!"
This from an inventor, an engineer, a man who had assembled million-watt transmitters, with his own hands, in a Costa Rican jungle and in Botswana's Kalahari Basin.

Jim began researching "dementia." We all knew what was happening, but we remained helpless to do anything about it. Mom wouldn't discuss the subject. In her view, whatever was happening to Dad was their business - hers and his. They would handle it, she said. But we knew it was only a matter of time before "they" couldn't handle it. Mom would need skilled help.

Jim began touring assisted living facilities in the area. Most were dingy and depressing, he said. About one, "I wouldn't put a dog there." About another: "It's like a lot of sick people with nobody taking care of them."

We were in over our heads, and the water was rising.

Friday, November 7, 2014

Saving Dad: A Daughter's Story, Chapter 4

In early 2007, my brother Jim and his family moved back to Atlanta from Dallas, where they had been living for eight years. During Jim's time away, there had been long lapses in our communication, because of his demanding job; but we were close, in spite of living hundreds of miles apart for most of our lives. Whenever we talked on the phone, I loved catching up on what he was doing in Dallas, and telling him about my life in Florida. We seldom talked about Mom and Dad. I don't recall ever sharing my concerns about changes in Dad's behavior with Jim, so it must have been a terrible shock for him to see those changes firsthand. I wish I had forewarned him.

Six months had passed since Mom and Dad left my home in Jacksonville. Every time I talked to Mom on the phone, she insisted everything was fine. Dad wasn't angry. The incident that had sent them packing was forgiven and forgotten. They were enjoying the early spring weather. They had a food delivery service, so they didn't have to go out as much anymore. Yes, they enjoyed the packaged foods I was shipping through Amazon. No, they weren't interested in going to the local senior center I recommended. They were doing just fine. I shouldn't worry so much.

After Jim's return to Atlanta, communication between me and my brothers increased rapidly. Both Jim and Tim lived only twenty minutes from Mom and Dad, and from each other; and they visited our parents every week or two, so it wasn't long before Jim began asking questions. For example, why did Dad ignore conversations, even when people were speaking directly to him? And why did he walk away from company and sit by himself so often, sometimes in a different room? All of us had heard Mom blame Dad's hearing loss over and over, so my brothers joined forces with her, and together they finally persuaded Dad to get a hearing aid. Most of the time, he didn't wear it, because it was uncomfortable, he said; or he turned it off, because he didn't really need it, he said. But, when Dad used the hearing aid, everyone agreed he was more responsive to people around him. We felt better, and worried a little less.

In late spring, Mom and Dad decided to sell their house. They put a "For Sale By Owner" sign in the front yard. Selling property without a broker was not unusual for them. They had passed real estate exams years ago, and felt comfortable dealing with prospective buyers. But, why now? "Trouble with the neighbor," Mom said. My brothers investigated.

Dad told Jim that the neighbor on the right side of the house was moving his fence at night, a few inches at a time, encroaching over the property line little by little, in an effort to claim some of my parents' land as his own. Dad had faced off with the neighbor across the fence at least once, according to Mom, and accused him of trying to steal their land. Mom said the two men had argued so violently, she was worried about what might happen next. She had been doing everything she could think of to keep Dad from going out of the house whenever the neighbor was home. She had even rented a post office box, so Dad wouldn't walk down the driveway to the mailbox and risk a chance encounter.

Both my brothers did their best to convince Dad it would be impossible to move a chain link fence a few inches - or any distance - overnight, let alone night after night. But, Dad insisted the neighbor could - and did - move it, although he hadn't caught the man in the act.

During one of my visits in 2007, Dad showed me where the fence had been before, compared to where it had been moved. The fence was overgrown with weeds, which I thought might account for Dad's sense that the distance between the fence and the side of the outbuilding next to it was shrinking. I struggled to find a reasonable explanation Dad would accept. Worry about the fence was keeping him - and Mom - awake at night.

In desperation, I suggested having a survey done and comparing it to the survey that was done when they purchased the house. Matching surveys could prove the fence hadn't moved. But, Dad wouldn't allow a surveyor to come on the property. Mom said even if one of my brothers accompanied the surveyor, Dad wouldn't believe the results. To make matters worse, Dad's blood pressure was skyrocketing, and he refused to see a doctor.

Selling the house became Mom's top priority. She had to get Dad away from the constant threat of "trouble with the neighbor." She just hoped they could find buyers before Dad and the neighbor came to blows.

My brothers and I understood Mom's motivation, but we didn't think a "For Sale by Owner" sign in front of the house was a good idea. Anyone seeing the sign could knock on the door and pose as a prospective buyer. Then what? I talked to Mom about potential dangers, but she was adamant about selling the house without a broker. Dad wouldn't allow any outside help.

Jim seemed to have better luck communicating with Mom and Dad about security concerns. After he talked to them, the "For Sale by Owner" sign came down. But, the next time Jim drove by the house, it was back up. When Mom told me about a group of prospective buyers who said they wanted the house, but told hard luck stories and had no money to buy, Jim gave the security talk again. As before, the sign came down for a few days, then went back up. We were getting the message. The sign was staying up.

During a hot spell, Jim got a call from the local police. The station had received an anonymous tip about elders in distress and dispatched an officer to our parents' house. Mom had given the officer Jim's number when Dad started shouting "get out of here!"

The officer told Jim the temperature in the house was over 100 degrees when he arrived. Jim could hear Dad through the phone shouting in the background. He drove to the house.

As soon as he arrived, the officer said if Jim couldn't do something to remedy the situation - immediately - he would have Mom and Dad removed from the house and taken to Health and Human Services. Jim promised he would take care of things.

After the officer left, Mom explained she had called the air conditioner repair man Jim recommended after the system stopped working, but Dad wouldn't let the man do the repair; in fact, Dad threw him off the property, claiming he was trying to take advantage of them by suggesting unnecessary work. Jim called the repairman to find out what was needed. Then, he went out and bought a condenser unit and installed it himself. The temperature in the house started cooling down. When it got below 90 degrees, Jim went home.

As soon as I learned about the incident, I concluded that one of the "For Sale by Owner" drop-ins, probably someone I never heard about, had been the good Samaritan who called the police. Mom and Dad were lucky. We were lucky. Our parents were at risk - and we had no idea of how to keep them safe.

I lived eight hours away by car. Jim's job occupied 50-60 hours a week; he had a family at home to take care of; and he was often on the road. My brother Tim had a similar situation. Mom and Dad knew our limitations, so they were intent on doing as much as they could themselves, without asking for help. But, even tasks like collecting the mail and getting groceries were becoming problematic.

Dad wouldn't let Mom go anywhere without him. And, he always insisted on driving. They went to the store and the post office once or twice a week. Fortunately, both stops were within a one-mile radius of the house, and Dad seemed to know his way. Although Mom felt confined by Dad's insistence that she never go anywhere without him, she didn't really want to leave him home alone either. They had become very protective of each other - and too isolated, I thought.

Several times I suggested Mom go to the nearby senior center and check out transportation and other services available to elders, but she believed senior centers were for socializing, and Dad wasn't sociable; and she equated the idea of senior services to social services, which she said they didn't need. I was never able to convince her to make even one visit to a senior center to find out what was available to make their lives easier. My brothers lived close by, and she could call them if there was a problem. Period.

The feeling of helplessness weighed heavily on all of us. But, we had to keep trying.