Gale grew up in Detroit, Michigan in the 1930s a few blocks away from the state fair grounds. She was proud of graduating from Pershing High School and that she was the author of her class poem describing who they were, their goals and dreams. My mother’s generation of women was not expected to attend college and she struggled with that later on in her life. She had many secretarial jobs until she married my father, Don. The two met at a golf tournament when they both worked at Ford. My mother loved skiing too. She called herself Queen of Waters, Michigan – a small ski hill in Lower Michigan.
American history was something Gale had a passion for. Gale received her Associates Degree in American Government at a community college in Royal Oak, Michigan, that was a big accomplishment in the 1970s. My parents lived in Maryland in 1990s and loved to take Sunday drives to civil war battlefields, harbor towns and tour the famous sites of D.C. Their house was filled with antiques. The living room was a wonderful place to entertain family and friends – stories were told about where the hutch came from, the dough chest, salt/pepper shaker sets, decanters, and the queries would go on. My mother was a walking encyclopedia on the presidents especially Lincoln, Eisenhower and Roosevelt. Jimmy Carter became one of her favorites – his hometown appeal with a wealth of understanding about the world was something she admired. When visiting Gale and Don, you for sure would visit an antique shop or two, or tour historic Annapolis or D.C.
My parents were very generous with their time and money. They gave back by volunteering at the local church, hospital or community center. They supported families in the Philippines and those at the church their friend Father Finnigan led. Even after they moved from Michigan, they never forgot Father Finnigan and his church located in the inner city of Detroit. Gale gave much of her time to others. She taught catechism and adults to read. Gale was a committed letter writer to all her family and friends (her kindergarten friends were some she cherished most). No matter the occasion, there was always a card or letter from my mother in someone’s mailbox.
After my father’s death in 1995, Gale focused on writing and publishing poems as well as playing her accordion. Writing and playing the accordion were two activities that she was encouraged to do by her parents. It was around this time we noticed mom was not quite herself. We attributed the personality change to our father’s passing. We encouraged her to visit each one of us especially my brother’s family with the grandkids. From her travels, she came down with pneumonia that nobody knew about and she treated as a cold. Upon arriving home from a trip to Europe, Gale was hospitalized with double pneumonia that was so severe that she remained in the ICU for several weeks. Prior to being released, Gale had occupational therapy to check her ability to live on her own again. There were a few activities that she had difficulty completing that made us decide to move her from Maryland to Illinois to live near my sister and where my brother intended to move. Her doctor in Maryland made us aware that the pneumonia may have initiated the onset of dementia for Gale.
We found her a two-bedroom condominium in Park Ridge, Illinois near my sister and brother. Mom still insisted on driving and shopping on her own. Gale knew a few people in the Chicago area; she lived in Chicago prior to getting married. She visited with her former roommates and joined a bowling league. Everything seemed to be going well until she began misplacing items and being more forgetful. One day, during a visit from my sister, Gale had stacked her Royal Copenhagen dishes in a paper bag ready for the garbage. My sister was quite disturbed by this, as these dishes were our mother’s favorite. Her VCR was found in the garage along with a camera and radio, items Gale would use and enjoyed. We realized her dementia was getting worse and it was time to rethink her living on her own.
The decision of moving Gale to independent living facility came about sooner than later. My brother received a phone call from the local police department regarding Gale’s driving ability. She made several illegal turns and did not notice or acknowledge the police car following her with lights on. The officer that followed her and tried to speak to her recognized the signs of dementia. He informed us that Gale would have to take a written driving test before she could drive again. We knew her days of driving were over and we were relieved because it was not us who had to take that away.
My sister, brother and I talked about the next step for our mother – where will she live where she will have a quality of life that fits her needs and abilities. Having her live with one of our families was not realistic given the strong will and independent nature of our mother and us having young families. We found an independent living facility that was within walking distance to a bowling alley, and offered meals and rides to place around town. My sister visited my mom daily and encouraged her to have house keeping come in to clean and help out. Gale did go bowling several times a week and would have lunch at her new residence. After two years, Gale began to wander and had a tendency to forget which apartment was hers. The director of her facility thought it best that we move her to an assisted living facility where she would be looked after a bit more. Their place did not have the staff to watch over people with memory impairment as they phrased it.
There were several assisted living facilities in the Park Ridge area that cared for people with dementia. We found one that was clean, bright and lively with a director of the memory care unit who seemed knowledgeable and caring. The floor that my mother’s apartment was on was considered secured. The elevator had a keypad lock as did the door to the stairwell. Gale’s vocabulary began declining yet her physical state was not. She still enjoyed bowling – my brother would take her once a week along with his kids to the local bowling alley. She enjoyed that very much. The number of phone calls to my sister or me began to decline. We would get 2-3 calls per day sometimes. We loved sharing stories with her about the day and the events that happened that day. She continued to send cards and letters. Once the director became aware of her accordion playing, Gale enjoyed playing it daily outside her room. Gale loved going out side for walks – she and my father would walk daily or ride their bikes along the bike paths in Maryland. She continued to walk and if no one was going to go with her from her new place then she was determined to get out on her own. She watched as the caregivers came and went on the elevator and memorized the buttons that they pressed to access the elevator. Gale would get on the elevator when no one was watching and take it down to the first floor. There were many people on the first floor coming and going or sitting in chairs near the front door that it was easy for Gale to walk out and go on her way. My sister received many phone calls telling her that mom wandered off again and they found her at the local grocery store or sitting on a bench swing at the neighboring apartment complex. Her facility did not have sufficient staff to take residents out on a daily walk or outing. The facility expected their residents to stay inside and participate in indoor activities such a balloon toss or chair exercises or watch television.
We received a call from Gale’s facility that she had wandered off again on a cold winter day. They found mom on the ground near the front of the facility. She had slipped on the icy sidewalk and appeared to have hurt her wrist. It turned out she had fractured her right wrist that was placed in a cast. Gale was not able to write or play the accordion with cast and after it was removed she never played or wrote again. She had forgotten both activities entirely. There was no physical therapy except for squeezing a tennis ball – no occupational therapy either for someone with memory impairment. We did not understand dementia and never thought twice about it.
Gale’s next move came when the assisted living facility opened a new facility designed specifically for people with Alzheimer’s and other forms of dementia. We were very excited about this opportunity as it was marketed as the first of its kind in Illinois. We were told that the care will be exceptional, all caregivers will be trained in dementia care and there will be a daily schedule that will fit the needs of our mother.
The new facility took the residents of trips to the local grocery store, park and even the beach on lake Michigan. It all sounded wonderful until the caregivers informed us that the residents would pocket items at the store, put sand in their mouths or wander away from the park – all big challenge to the caregivers. One outing the residents went for a ride on a sailboat. That event ended up with many of the residents seasick and vomiting on themselves, the caregiver and the boat. The facility director tried to take the residents out but there were no places suitable for people with dementia.
The facility had some wonderful caregivers – one sang to my mother “You are my sunshine”. Gale lit up each time she heard her sing. They would go on walks, stroll down to the hair salon (Gale would only sit calmly if her singing caregiver was with her), or sit outside in the courtyard. All was going great for the first year then due to financial reasons, the facility had to downsize the caregivers and the director hired less expensive caregivers who were not well trained. The singing caregiver moved on to another facility and less experienced caregivers took over. One night my sister received a call that Gale had found a bottle of bleach and poured some into a cup to drink. It was a very scary situation. At the hospital the doctors had to scope her to look for scaring and other signs of chemical burns. Luckily it turned out the amount she drank did not cause any significant internal damage. We found out later that a caregiver had left a bottle of cleaning bleach out on a counter, although there was a strict policy against leaving cleaning products unlocked when not in use. With all the changes that happened in the new facility, we decided that it was time to move Gale again to a safer place – the hospital highly recommended a specific nursing home for Gale.
The nursing home was the last place where my mother resided. It turned out to be less than desirable after the director had said that they have a wonderful and safe environment for people with dementia offering daily activities. It was indeed secure – only two hallways and one common area for people with dementia to walk around. Daily activities included hygiene, dressing and eating. The residents would sit staring at the television or wall. The only interaction they received was during the physical activity time when a caregiver would bring out a balloon to toss at the residents who merely stared at it while it hit them somewhere on their head. We decided to hire someone to spend a few hours on days my sister could not make it in. We hired a woman who we considered an angel as she would care for Gale like her own mother. She would hold her hand, walk with her, talk to her and just be there for her. Gale responded well to her and smiled. All was good when we brought in extra help. Gale lived at the nursing home for several years until she passed away in 2009 with her family by her side.
Reflecting back on the events that happened to Gale during her life with dementia and educating myself about dementia care, I wrote down ideas that would have made life better for my mother and others with dementia living in a long-term care facility and even at home. My mother enjoyed being outside and walking, playing cards, listening and dancing to boogie woogie piano music, writing a card or letter, looking at old photos, sitting at a diner with her girlfriends drinking coffee, bowling, things that she would be familiar but doing these things daily – not just once or twice a month. These activities brought about the concept of Sensory Outings Center. I wanted to create a place where people with dementia may visit daily that is safe and familiar, and the caregivers can give time and energy to make part of a person’s day enjoyable. I wanted a place where caregivers may learn new things about the person that they are caring for, learn new methods of interaction and care giving, and family and friends may become educated about the disease that their loved ones are experiencing. Each long-term care facility where Gale lived asked for information about her such as what activities, food, colors, and music does she like? We thought that was wonderful and that they would use this information to work with her and make an environment that was more for her– this never happened. I want to use this information at a Sensory Outings Center to have activities or music or food or smells or colors that people who spend time there will enjoy. I want Sensory Outings Center to provide opportunities for a person with dementia to reconnect with an activity that they may have forgotten like writing a card, playing an instrument or buttoning a sweater. I want a Sensory Outings Center to be a place where moments of joy happen.