By Zeik Saidman
We lied, kidnapped, abandoned and then manacled and drugged my mother-in-law. At least this is the way my wife describes the experience of placing her mother in a nursing home.
True, we did use the therapeutic fib (Alzheimer’s experts use this concept) to lure her to the nursing home facility. We told my mother-in-law that she was going to visit with the “nice man” who had come to her home to talk about senior services in the area. In actuality, he was the director of the Alzheimer’s unit and his visit was to conduct an assessment for eventual placement.
The reality of that dreaded day was that we took my mother-in-law to a nice restaurant for lunch. Afterwards, we drove along a beautiful river near the nursing home. We parked to enjoy the scenery and listened to the 1940s music on the satellite radio. She remembered many of the songs and hummed along with a beautiful voice, one part of her that had not been affected by the disease. We left the scenic site with the music playing.
We arrived at the facility, which had been built in a pleasant middle-class neighborhood 60 years ago. It has that 1950s brick, square institutional look.
My wife and I brought her inside on the pretense of meeting the nice man. All was proceeding smoothly until a friendly receptionist said: “You must be the new resident.” We gave the receptionist a look to quiet any further conversation; fortunately my mother-in-law missed the comment.
My wife had researched nursing homes in the area extensively and had found one with a five-star Medicare rating, the highest it gives. Even rarer than the high rating, this facility also accepted Medicaid patients. However, waiting to take the elevator to the second floor by the reception/nursing station, one is conscious of the elderly patients with limbs missing, sitting in wheelchairs. The staff wears slings around their necks to hoist residents. You are aware of medical equipment and personnel at ready to respond to the needs of the residents.
My wife had searched the Alzheimer’s literature and talked to experts and friends seeking advice on how to move a family member into a nursing home. There was no clear guidance, except for the universal consensus that there’s no way to prepare someone with Alzheimer’s for a move like this.
She drafted scripts in preparation for what she knew would be a volatile conversation. As we entered the director’s small office and sat down, we told my mother-in-law that her home caregivers wouldn’t be available for a while, but she would be able to live here temporarily. All the preparation went by the wayside. She angrily stated that she wanted to go home. My wife calmly said that was not possible and that she would have to stay here for the time being.
Barely five feet tall and weighing under 90 pounds, my mother-in-law stormed out of the office. She expressed her rage to the staff in the hallway as she sought a way out. She returned to the office several times, shouting, “There’s nothing wrong with my mind” and “I’ll jump out the window if I have to stay here.” My wife remained composed at her mother’s onslaught and tried to comfort her but she wasn’t having any of it and resisted any touching. Before we left, we heard the sound of ripping paper. My mother-in-law had torn the “Welcome” sign off the door to her room and had shredded it into little pieces. She deliberately placed the torn bits in my hand, looked me right in the eye and said “traitor,” repeating the act with my wife. At the urging of staff, we reluctantly departed and promised to be back.
When my wife called later to check on her, she was told that the staff had placed a small bracelet on her ankle to monitor her movement. Later, they called requesting permission to administer a sedative, because she had become distraught and combative.
For my wife, this was the hardest thing she ever had to do in her life—harder than losing her father to a brain tumor that killed him within six weeks of the diagnosis. The act of moving a loved one from her home of almost 60 years is highly emotional and guilt-ridden. The stress continued the next day with a meeting with lawyers to make sure the myriad of paperwork had been submitted for her Medicaid application and finding a trustworthy realtor to sell her house in a severely depressed market because her assets must be depleted to receive government aid.
And the guilt remains. My sister-in-law speaks wistfully of winning the lottery so she can get her mother out of the nursing home and back into 24-hour in-home care with nurse visits, which cost about $7,000 per month. But my wife points out that during that 24-hour-a-day care, her mother spent much of her time at home, sitting in her favorite chair. Now my wife dutifully calls her every other day and regularly checks in with staff to monitor the situation, which has improved in many ways due to the structure, medical care and social stimulation provided by the nursing facility.
She seems to have adjusted to her to circumstances, but still makes comments about going home, though she doesn’t press the issue. She is participating in activities such as singing and dancing. She is a people person and has begun to assist other residents. I am sure she will become a staff favorite.
Alzheimer’s is a cruel disease. It is a physical illness that slowly and insidiously destroys parts of the brain. Sometimes my mother-in-law seems her old self and other times she is very confused. Incontinence is part of the sickness. For a modest and independent person, this is an ongoing indignity. The dedicated staff at the nursing home has come up with solutions to keep her clean and her self-esteem intact.
Both sisters agonized and regretted having to make the decision to move their mother. We’ve had heartfelt conversations with friends and family members about the choice we’ve made. Many told us stories about dealing with similar situations.
The Alzheimer‘s literature uses the metaphor of a tsunami. The projection is that one out of every two people over the age of 85 will have some form of dementia. As the baby-boomers, age this challenge will loom as one of the major health care policy issues to be resolved. The emotional and economic costs to families and society will be astronomical.
Can we come up with compassionate and reasonable answers to address this tidal wave of dementia soon to hit our shores? Difficult as it will be, it’s a challenge we must face.
Zeik Saidman is associate director of the Center for Public Private Sector Cooperation at the Buechner Institute for Governance at the School of Public Affairs.