An open letter to presidential candidates: I have listened to your pontificating about “health care for all,” but there is no proposal in your speeches or on your websites that includes a plan for long-term care for people with progressive diseases of the brain, such as Alzheimer’s or Parkinson’s diseases.
There are 5.8 million people in the U.S. today with Alzheimer’s disease, and the number of people with Parkinson’s disease is not clear because the diagnoses are not as definite. However, there are 60,000 new cases diagnosed each year.
My husband has Parkinson’s. Last fall, I thought it was the end. A doctor suggested medical marijuana. Luckily, it is legal in Massachusetts, and after six months, he improved both cognitively and physically so that we were able to dismiss the $25 per hour, 7 a.m. to 2 p.m.; 8 p.m. to 7 a.m. health care workers I had depended on, and I was able to handle his care myself.
My husband and I are members of a large, aging middle class that kept saving even after paying off education costs and mortgages, because we wanted to remain independent. We wanted to stay together at home no matter what our health limitations, so we worked on building savings rather than buying long-term care insurance.
When I had to hire health care workers, we began spending down of our savings to cover costs, and I claimed $52,000-plus for health expenses on our tax filing. We received a refund of slightly over $8,000. Subtracting the cost of our insurance and Medicare, in less than five months of part-time care, we had spent down over $30,000 of our savings.
The reality for all families with a person with Parkinson’s or Alzheimer’s is that periods of improvement are only temporary, and we cannot anticipate how many years are left for our savings to cover. And we caregivers are also vulnerable to debilitating diseases. We pay off our homes and make improvements so that health care workers can come to our homes to care for both of us.
We, and the many aging middle class people, who like us have saved and prepared their homes, should be confident. But we are being punished for our hard work and the determination to take care of ourselves by a tax code that radically reduces the amount of health care expenses that is returned, and makes it uncertain how long we can remain independent.
I am in a Facebook group for Parkinson’s disease, and the worries and the appeals for advice and empathy are heartbreaking. Last fall when I knew I could not care for my husband myself, I visited an area facility. The facility and the program seemed excellent, until I was taken to a bedroom where he would spend his nights. The memory of that visit still brings a sob.
It’s been 59 years this month since I promised to love, honor and cherish my husband, for better or for worse, in sickness and in health, for so long as we both shall live. How could I leave him there, alone without me and not understanding where he was or why?
I am speaking to you on behalf of all of us middle class people who scrimp and save in order to take care of ourselves and our loved ones — to keep us together for so long as we live. We can do this, if you simply change the tax code to make certain that we can ensure that we keep enough savings to pay for health care in our home for the rest of our lives. You could even make a system of deferred taxes: Our health care expenses are refunded each year, but at the death of both people, a portion of those refunds would be taxed.
Keeping people in their homes is economically beneficial to the United States; we all know that the number of people with cognitively-deterioriating diseases is increasing each year. It would be less expensive to encourage people to stay in their homes rather than building the number of life care facilities that will be required.
Cynthia Loring MacBain lives in Easthampton.