As a second-wave feminist, we always say that the personal is political. The budget discussions are continuing, and the Republicans and some Democrats would like to make substantial cuts to both Medicare and Medicaid. Many people do not know that Medicare does not pay for long-term nursing home care. The GAO reports that:
Almost half of all Americans over the age of 65 will rely on nursing home care at some point in their lives, and two in three nursing home residents have their care covered at least in part by Medicaid.
Tonight I want to talk about my 92-year-old mom's journey from mild cognitive impairment to serious dementia and some of the problems that those of us who are caring for seriously ill nonagenarians face. Please follow me below the squiggle.
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The old-old, those Americans who are over the age of 85, are one of the fastest growing segments of the US population. One out of every three women who reach the age of 65 will reach the age of 90. The Alzheimer's Association estimates that about one-half the people over age 85 have Alzheimer's disease. Alzheimer's is the most common form of dementia, but there are several other types such as Lewy body disease. Most types of dementia are not treatable, but some drugs such as Aricept may slow the progression of the disease in some individuals.
My mom was a strong, tough, and healthy individual. She graduated from high school during the height of the Depression and earned a college degree in 1940. Mom retired at 75 from a job in research accounting at a major university. My mom didn't drink or smoke. She swam regularly, and she was a community volunteer. Her health was excellent until she reached her mid-to-late 80s. During 2004 and 2005 she started complaining about nausea and and later about back pain that seemed to have no obvious physical cause. I took her from doctor to doctor, but there was no clear cause for her nausea. When she started complaining about back pain in 2005, she was sent to a pain specialist. He was sharp and ran a simple cognitive test on my mom. He asked her to draw a clock face. She failed miserably. We took Mom to the neuropsychology clinic at the University of Pennsylvania, and she was diagnosed with mild cognitive impairment. Mild cognitive impairment affects memory and higher order decision-making skills. It makes it difficult for an elderly person to manage his/her finances and to follow complex conversations.
The most difficult part of the diagnosis was that mom could no longer drive, doctor's orders. Son 1 and I had to take her car, and it was one of the hardest things I have ever done. Even before the diagnosis, my mom was struggling with day-to-day life--shopping, preparing simple meals, etc. Blue jersey dad and I were headed to a conference in Bulgaria at the end of the summer of 2005, and we knew that we needed to find respite care for her while we were away. We visited every assisted living facility in the greater Trenton-Princeton area, and we chose the one that seemed to fit my mom's needs. She spent two weeks there while we were in Bulgaria, and at the end of our trip, she decided to stay there permanently.
Although my mom was rather frail (she is also deaf and suffers from osteoporosis), she did well in assisted living. We could visit her often, and she spent the holidays with our family. We even took her out to lunch for her 91st birthday. Everything changed in January of 2010 when my mom's hip fractured in three places. Her accident happened while dad and I were in Egypt, and so my sister made the decision (after the surgeon put a lot of pressure on her) to have my mom's hip reconstructed. Things went rapidly down hill from there. My mom was overdosed twice while she was still in the hospital. Her rehabilitation was unsuccessful, and she fell and dislocated her shoulder in March of 2010. A few days later, she suffered respiratory collapse. I asked about hospice care, and it was estimated that my mom had no more than a few weeks to live.
No one can predict the future, and my mom is still alive 16 months later. Since April of last year, her cognitive functions have declined dramatically, and she now has severe dementia. I am the only family member whom she can reliably recognize. She has hallucinations, and she can't distinguish between dreams and reality. She sees cats on the ceiling and talks to people who are not there. She can't be placed in a geri-chair, because she doesn't remember that she can no longer walk. She is completely incontinent, and she needs round-the-clock care. Her weight has dropped to 66 pounds, and she is now so fragile that she needs to be moved using a sheet.
Here is where the political meets the personal. I am using the proceeds from the sale of my mom's home to pay for her care. Medicare provides hospice services, but I pay for her bed in the assisted living facility. Eventually she may outlive her money, and she will need Medicaid. Folks like my mom really cannot be cared for at home. They need round-the-clock care. Cuts to Medicaid will have disastrous effects on people just like my mom. As Hubert Humphrey said:
It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.
We cannot allow the deficit to be reduced on the backs of America's most vulnerable citizens.
I would be happy to answer any questions you might have about eldercare, Medicare, assisted living, and dementia in the elderly.