Introduction: As we gather with family and friends on this celebration of our national independence, let’s think on independence and quality of life as we or our family members age.
Despite harping about the flaws of our health care system I have seen a system work. After my father’s death I became my mother’s caregiver. I was confident I could manage her care. I had worked in and wrote about health care for nearly 30 years. I started my health care career in aging and long-term care. I had been a Medicare HMO marketing director. I knew it all. I thought. Here’s what happened to my family until we found a system that worked:
A quick family snapshot: My parents were affluent. My father had a successful Navy career and worked for the San Diego Chamber of Commerce after retirement. He had full military retirement and health care benefits, Medicare and Medicare supplement insurance. They owned their own home. My father invested well. They traveled and lived an independent and abundant life. Then my mother had a devastating stroke in 1997. We lived in distant cities—San Diego and Seattle.
I learned later from her friends that she instantly lost much of her cognitive abilities, could no longer complete crossword puzzles, play bridge or Mah Jong, read books or the newspaper which she loved or even hold a conversation. These deficiencies were not readily apparent to me while my father was alive. He had assumed all the daily tasks of shopping and cooking after retirement. He had always handled the finances. I noticed some changes on one visit here, but my father dismissed them. I did not live close enough to notice the extent of her decline.
Then my father died suddenly of a heart attack two years after my mother’s stroke. I was divorced, worked full-time and traveled extensively. Overnight I became the sole and a long-distance caregiver.
After the funeral I flew to San Diego once a month to spend time with my mother and help with her affairs. I hired a service to take her shopping and to have her hair and nails done because she could no longer drive. I assume she returned to her normal life. I went more frequently if there was a problem. I assumed some of her problems stemmed from her grief. But, the problems became more frequent—with calls from both her and her neighbors
Despite her circle of friends who insisted I keep her in the home she loved these friends and neighbors soon began insisting she should no longer live alone. Her neighbors were increasingly concerned about her ability to live alone safely and they could not handle the routine problems she was having with basics like TV and the microwave. My parents’ local bank even called once to tell me she was walking to the bank once a week, withdrawing $400 and walking home. She had to move. Getting her to agree to that decision was horrendous. She did not understand why. Her home was all she knew and the home she most cherished after all our military moves.
I found a local retirement community that seemed perfect. It was well appointed and near her friends. We could afford $4,500 a month because we sold the house and had a small family trust. Because of her impaired cognitive abilities, however, she made no new friends and old friends slipped away. We finally agreed she should come to Seattle where I lived.
What Didn’t Work, What Finally What Did and Why: My mother was an elegant woman. Appearances mattered to her. As I tried to meet those needs, I soon found that appearances are very deceiving. I thought I knew what to look for and what questions to ask. I was wrong.
Here’s what happened before I found a system that cared for and supported both of us:
- The retirement/assisted living facility in Seattle whose appearance would meet my mother’s expectation turned out to be awful. As I looked more closely, I found they did not manage her medications or even routinely clean her room. The cost was about $4,000/month for her room, meals, medication management and some ‘social’ activities, which were largely just weekly bus trips.
- Friends recommended a wonderful facility where their father had lived. The staff was kind and supportive. It was ideal. As my mother’s abilities declined, however, they did not have the range of services to care for her increasing dementia or provide the personal care she began to need. The fee was about $5,000/month and included meals, cleaning, social activities and medication management. But she had to move.
- I wanted more personal care for her if possible, not institutional care. I hired someone who specialized in dementia care to help me find an adult family home. We found a nice one. My mother had her own room and the personal furnishings she loved. Because I worked full time and traveled extensively I could not always visit frequently. I hired a service to take her out once a week so she would have external stimulation. These combined costs were still around $5,000/month.
- Then the owner married and sold the facility. The new owner changed the staff and relaxed the care standards. She increased the rate to $6,000/month
- As I looked around I found that most dementia care facilities were at least $7,000/month. I found them stark and depressing. They were not places I wanted for my mother.
- A colleague told me about the program where he was medical director. It was a wonderful program that included a range of services. She had her own care team of a doctor, nurse and social worker. They selected and oversaw the adult family home. The home was with a vibrant caring family with children and grandchildren visiting often. It felt like a home. The team arranged for all her medical care needs and the nurse and social worker checked on her regularly. They even called me to see how I was holding up. The fee was about $5,000/month.
- Two days before she died the doctor, nurse and social each called me separately and individually to tell me what they were doing, what I needed to do and what I could expect. They called a minister, a hospice nurse and the funeral home. They arranged for my mother to remain at the home while she died. I was able to be with her when she died peacefully with me and the people who cared for her and treated her as one of their family.
Why This System Worked: Reflecting on this I think the final program worked because it:
- Respected the individual person and the family, especially as care demands increased
- Focused on the patient’s quality of life and the family’s if there were one
- Strove to preserve independence and personal dignity
- Involved the patient in family in critical decisions
- Explained their decisions and reasons for the courses of actions they recommended
- Combined medical, social, emotional and non-medical supportive services
Facing Long-term Care: I cited costs as well as care because Medicare does not cover long-term care. Even in retirement communities, medication management can be an additional cost, as is assisted living care, as is long-term care in a nursing care. Medications are costly and not covered completely.
Medicaid covers many long-term care costs. To be eligible for Medicaid, however, a person must meet Medicaid’s complicated income and asset test. Individual income and asset tests vary by state. My mother would never have been eligible for Medicaid. What she needed was not covered by Medicare or her supplemental insurance. Even long-term care insurance does not assure all needs will be met. Their premiums often increase annually.
Funding for good long-term care programs is difficult given how we pay for health care in general. It is a purely medical model. I chose Providence Elder Place in Seattle because of my trusted connection there. It was for low income patients, but they accepted private pay patients as we were. Their program served my mother’s needs and respected her as an individual. Their payment structure included the medical and the non-medical services from transportation, to the social and the emotional when needed. I was included in decision making and they called to make sure I was faring well with the stress of caring for a frail and declining parent.
Local Area Agencies on Aging can be a beginning resource: http://www.n4a.org/
Coming next: Interviews with some respected, candid authorities and consumer advocates about the realities of aging, long-term care, and financing.
Please Support our work, and Donate today. Share with friends who have similar concerns. We are beginning work on our new website so we can include more stories, insights and resources. We also intend to be a watch dog on the industry as the ACA moves forward. We will outline actions you can take in your own community, like providing showcases such as these and interviews with candid advocates and insiders. There are tools we can use to make the system work for us. We must use them. It is possible to make a difference.
Kathleen O’Connor © June 28, 2015