Life, Liberty and the Pursuit of Happiness

Memory Care Professional, October 2003

The visual is etched in my memory. I drop off my sister for her return flight to her home in Arizona. She hugs me goodbye in an awkward way and fumbles, unable to say anything comforting or encouraging. She walks off and I turn to look at Mother in the back seat of the car, smaller than ever, frail, vulnerable and scared. I have an instant flashback of taking my oldest child off for his first day in kindergarten. Both expressions are the same: "How can you do this to me?"

Finding a New Home for Mom

After an eye-opening one-week stay by my sister at Mom's home, Sis and I began a concerted campaign to persuade Mom to give up her home and get some help. This scenario happened over a period of time. Mom always had a reason to stall. I certainly thought that I could influence her, as I am a professional who has worked with retirement housing issues for over 20 years. I quickly realized there was a terrific discrepancy between the marketing consultation I had been dispensing to sales and leasing staff and the responsibilities of being a daughter.

The turning point came when her personal banker called me and asked if I knew how confused Mom had become. To my dismay, I had not. Once I had constructed a complete picture, I took a firm stand. I told her she would be moving on October 1, a date three months away. Every time I talked to her, as we started into the logistics of getting her home sold and the move arranged, I reiterated that she would be moving on October 1. She was equally as adamant that she would not go. Obviously, it came down to a battle of wills.

The community I picked was new, pretty and relatively small. I liked the idea of the intimacy and local ownership. Best of all it was affordable. The owner/operator was new to the business but seemed well intentioned. At that point I made a conscious decision to always deal with the staff from a daughter's perspective, not as a professional.

Making the Transition

There was still a great deal of resistance but the family prevailed. Three of us packed her up and literally threw away 40 bags of accumulated "stuff" daily for a week, then held an estate sale for the rest. To convince her that she could live comfortably in a studio apartment, I cut out shapes of her best furniture from newspapers and spread them around the room. We attended social functions at the new community, often with her best friend, to reassure her that this would be a good transition.

We sat with her in each room of her accustomed home and recalled the fond memories we had of family together. We used photo albums as a way of helping her recall the happy times. We then made a little ceremony of saying goodbye to the house and the fine memories. It helped, but moving day was still terrible. My bargaining chip was that she could keep her car. I drove it into the parking lot of the retirement community, locked it up tight and took the key (she could never remember where the keys were, so I knew I was okay on this one).

Now, the day I will never forget,

She was in the back seat of my car and I was off to deliver her for her first day at her new home. Guilt was my co-pilot. Here I was, taking charge of the responsible, loving woman who had always been in control. I was altering her life, taking away her liberty and wondering if she would ever be truly happy again.

Ultimately, adjustment came, and with it some modicum of happiness. Unfortunately, the community did not have a dementia-specific program. The warning signs of the staff's inability to deal with this problem began to emerge. One of their strategies was to put all of the little ladies who were "confused" together at a dining room table for meals so that the others would not ostracize them. Because there was no one to re-direct or facilitate when they became irritable with one another, they often became angry or frustrated with one another. I sensed a continuing frustration on the part of staff, too, in dealing with Mom. As the dementia increased she became more and more stubborn and irritable. Something else was needed.

Wanted: Trained Caregivers

Seasoned professionals who are trained to deal with memory support programs subsequently have trained me in what to look for. A good friend and professional colleague, Maeve Reddin, Executive Director of The Village at Sydney Creek, an Alzheimer's and dementia care community in San Luis Obispo, California, says, "There comes a point when Assisted Living is not enough. The person's behavior changes. They know that something is wrong with them and become very frightened. The staff in Assisted Living isn't prepared to deal with this.

"It's difficult to get the family to make the transition from AL to special care. Their rationale is that 'Mom's OK - not like those people.' Only when it becomes clear that the AL facility will not care for Mom any more will the family agree."

Learning on the Job

The end to Mom's time there came very suddenly. She tripped and fell outside of her apartment. Her well-meaning roommate, a younger woman who was mentally challenged and inappropriately placed with this aging population, decided to grab her by the arms and drag her back into her apartment. She was in pain with a broken tailbone, which was not diagnosed for weeks. Mom quit getting out of bed and refused to walk. When it took two people to transfer her, I was informed that I would have to move her out. Unfortunately, the staff never believed that there was a legitimate physical problem. Untrained in the care of Alzheimer patients, they thought she was just being difficult and were quite unsympathetic. I was heartbroken at her treatment and realized that a nursing home was the next step. Her happiness and quality of life were seriously diminished, and now her liberty and independence were at an end. She has never walked again and is confined to a wheelchair.

As friends and colleagues experience this "passage" with their families, it is a frequent source of conversation. I know I haven't made all of the right decisions as a daughter, or as a supposedly informed professional. It does, however, remind me of the conversations we had when we were trying to learn to be good parents. We were then, and are now, learning "on the job." As I recently told a friend, one of Mom's favorite expressions when someone was feeling down was "I record only the sunny hours." That has become my mantra now, too, as we try to bring tiny pieces of life, liberty and the pursuit of happiness into all of our moms' lives.

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