My Vote for Caregiver-in-Chief

I am among the 54 million US caregivers who are looking closely at the two presidential candidates and trying to decide who will provide us with the help and support we desperately need.

For the past 18 years I have cared for my wife who has late-stage Parkinson’s, advancing dementia and severe osteoarthritis. She is unable to walk, lives her life in a wheelchair, is delusional and suffers from medication-induced hallucinations, and only on one of her rare, good days does she know who I am. My days start early and end late. During this time, I prepare and spoon-feed her meals, triage a myriad of medical and pharmaceutical issues, supervise a home health aide and intercede when my wife is agitated or otherwise uncooperative, do laundry, shop for food, and respond to a never-ending litany of health emergencies. The latest being this past week when she started vomiting, accompanied by slurred speech and face drooping. I thought she was having a stroke (one of the precursors of death for Parkinson’s patients) and called 911. After a nine-hour stay in the ER it was determined that she did not have a stroke, seemed OK and allowed to go home. Until the next time.

We arrived back home at 10:30, at which point I had to make her some food and help her eat, let the dog out and feed her, eat a slice of pizza for my only meal of the day, clean the kitchen, help her brush her teeth and get to bed, soak her clothes that had been festering in vomit, and after checking my work email, I joined her in bed at 1:00. Only to be awoken by one of my wife’s many delusional episodes at 3:15. And another day begins.

As much as I am concerned about the policies Harris and Trump plan on issues important to me like reproductive health and choice, economy/taxes, global defense, climate, and border security, this time around I am myopic in my selection. ?I will choose the candidate that I feel will make caregiver support a priority.

Although largely invisible and disenfranchised, caregivers are an integral part of an aging society. As a workforce, 54 million people would represent the largest US industry by far providing hundreds of billions of dollars in unpaid care annually. Care which few of us can afford. In my case a part-time home health aide costs nearly $60,000 yearly, wheelchair enabled transportation to medical appointments another $3,000, and medicine nearly $10,000. This doesn’t include the $100,000 I put into home renovations to make our house wheelchair accessible; none of which was covered by insurance. Plus, the lost revenue during those times when I am caregiving and not working. With these numbers, it’s hard to imagine caregivers as invisible. How can the government be this blind and unaware?

Both candidates are espousing policies that prioritize caregiver support. Trump talks about safeguarding and bolstering Medicare and making elderly home care a foundational element of his second term. As yet, however, it’s only lip service. Not even a concept.

Harris’ proposals are still a work in progress, but she has put forth outlines of programs for at home elder care. What I like about Harris is that her policies come from a place that is far more personal than her opponent. She helped take care of her mother as she was dying of cancer. In my book, that is meaningful, and I am not alone in questioning whether Trump embodies this human quality.

What we are hearing from each candidate are still campaign utterances said to curry votes while developing and implanting policies remains on a shaky historical foundation of prior attempts at enriching the lives of caregivers that have sadly failed. The main reason for past failures has been cost. Expanded coverage does not come free and the hundreds of billions of dollars it is likely to cost for programs will never be a good fit in any administration’s budget. They typically come at the expense of existing initiatives which are likely to be downsized or eliminated altogether. Robbing Peter to pay Paul, as it were.

What I find preposterous and presumptive, is that in the absence of any real policies to aid caregivers, politicians and healthcare leaders alike expect families to shoulder the burden. A burden that is financial, physical, and emotional. Lifting my wife in and out of her wheelchair and our bed, plus on and off toilets has left me racked with pain and walking with a stoop of a much older man. Our nest egg that took us years of diligence and sacrifice to amass is quickly dwindling as I try to keep up with the costs that run parallel with Parkinson’s punishing pace. The money will disappear even more quickly when care comes outside our home. I can only hope that the money lasts longer than we do. Although it is not felt in the bank account or body, the emotional toll these years have taken has been the most difficult for me. Instead of embracing each day with the love of my life, I watch her move away from me while she holds the hand of a stranger.