Recently, I’ve been thinking about finding a home care advocate for my wife. Such a person could help in situations like ours, where a loved-one with cognitive impairment is tended by a mate, sib, or offspring. Neurologists have called her ailment moderate cognitive impairment, which is kind of a non-diagnosis—a wait and see. The onset has been slow. I can, perhaps, trace behavioral changes back 20 years; certainly I began to see erratic behavior 10 years ago, but I remember no solid date when change just happened. Early on, more than reacting to clearly definable actions, I felt increasingly anxious as she became less predictable. I eventually had to acknowledge that something wasn’t right.
Caregiving isn’t a role you choose. You gradually become watchful, more nervous and, ultimately, more judgmental. You eventually acknowledge that mental impairment exists and that it is getting worse. You seek professional advice. On the whole, it doesn’t help. In most cases, you are told that no cure exists; the malady will only get worse. And the person, now a patient, is placed on behavior-modifying medicines and is monitored periodically by a specialist. There are variations on this theme, but unless you are emotionally ready and financially able to put the person into a care facility, you become the caregiver. You begin to watch and regulate your loved-one’s behavior—a job for which you have no qualifications, experience, nor, for that matter, legal status.
But caregiver you must be--for the welfare of your unofficial ward, for your sake, for continued function of the household, and to protect your estate. You also become a reluctant disciplinarian. Caregiver becomes a misnomer. Guardian is a better term.
You monitor and interact with caregiver groups. You learn that you are not alone; that many others have assumed, willingly or not, the same hopeless, unending duty. You find a lot of sympathy but not much hope.
As one who has become an unofficial caregiver-cum-guardian, I often yearn for an expert to help me make decisions—an advocate for my wife, if you please. Being a guardian has made me a bad guy. She needs someone on her side. For example, one of the biggest decisions any of us face in protecting our ward, and our estate, regards driving. For my wife, loss of driving privilege was the worst form of restraint that could happen. She loved to get in a car and just go. But her cognitive impairment became more marked--loss of short-term memory set in, along with aphasia, and general confusion in unfamiliar situations. She lost the ability to even buy gas at the pump. Kinetically, she continued to be an excellent driver and seemed to retain her geographic memory. With me sitting beside her, she made all the right moves, right up the day the Motor Vehicles Division refused to renew her driver’s license, because she could no longer fill out the application form and provide her name, age, address, and certainly not her medical history.
I was relieved. Friends and family members had been commenting on the wisdom of “letting” her drive, and, as caregiver, I was the one who would have to take her keys. I put it off as long as I could. I thought that the driver’s license people had saved me from blame, hence I didn’t anticipate becoming the enforcer—the household cop that says many times a day, “no, you can’t drive. You don’t have a license.” After nearly a year, she refuses to accept the loss of driving privilege, and the subject comes up every time we get in a car. And it is me, not the state, that won’t let her drive, license be damned. So as a caregiver, I became the bad guy.
Another major loss of independence involved handling money. I cancelled her bank card after she withdrew $300 cash and immediately left the money somewhere, never to be found. She still complains about having no money. She is with me 24 hours/day, so “shops” alongside me when we are in a store, but I have to monitor her purchases to assure that she doesn’t buy items we already own en masse, pick up wrong-sized clothing or, load the basket with items we just don’t need. Here, too, I became the cop. Many other examples exist.
We don’t live close to family. Her sibs and children are sympathetic and appreciative of my care; they also offer a lot of well-intended advice, implicitly or implied in the form of “should” and “shouldn’t.” Should is a word I’ve come to hate. In truth, I often wonder if I’m too restrictive--if I’ve become knee-jerk in my efforts to control--if my expectation of a continuing decline causes me to always anticipate the worst. There are days I’d like to have a counseling session with a pro. I’m not talking about a doctor. My experience with them, especially specialists, is that they aren’t much good at advising caregivers. They diagnose, monitor, and prescribe, not much else.
We live in a rural area with limited home care services which focus on physical, not mental, infirmities. Friends and neighbors help where they can, and online caregiver groups certainly provide encouragement. But there are days when I’d like to talk with someone who knows my wife’s history and who professionally advises an array of people; someone that can place her behavior and my responses in a broader perspective. I’d be happy if such a person would take my spouse’s side at times, because the need to be a watchful guardian has made me an adversary, and I’m afraid it’s becoming a habit.