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The Lost Caregiver – Let’s not forget the stress, heartache and invisibility of our unsung heros

March 24th, 2014

As a geriatric social worker, I meet spouses, adult children, nieces, nephews, grandchildren, siblings, and friends who push their own needs aside and redefine their lives as a caregiver.  They no longer go to the movies, watch television, or go out to dinner with friends.  Instead, they wash another load of laundry, puree foods, or give another adult a bath.  These loving human beings call me for assistance, guidance and support as they try to navigate the public and private systems to obtain any and all services that will help their aging loved one.  They are not even calling for themselves.  No, they are calling for services for their loved one.

At an increasingly alarming rate, I am watching as our public system inherently betrays the caregiver in its attempts to meet the needs of the, for all intensive purposes, the “patient.”  Let me be clear.  I ABSOLUTELY believe that seniors who suffer from cognitive illnesses deserve to have their needs met.  I ABSOLUTELY believe that those who are not able to protect their own rights and to advocate for themselves deserve and need representation and a voice.

I write this article as a tribute to the unsung heroes, the caregivers, who systematically have their needs placed at the back of the line.  What do I mean by this?

A few years ago I worked with a spouse who was the primary caregiver for her husband who suffered from a severe case of Korsakoff’s Dementia.  The hallmark of this type of dementia is a history of alcoholism.  In this case, this is not a remote event; this patient continued to drink excessively every day, driving under the influence, and spending large amounts of money on alcohol.  Even though his cognition was severely impaired, he was physically able to ambulate, drive, and perform his activities of daily living autonomously.  Because of this, the spouse was told that he had to “consent” to relocation to a permanent facility or to a respite facility.  But there was a problem, he would not consent.

Subsequently, even though he could not remember how many children he had, where his money was located, how to organize a shopping list, how to administer (or even remember) to take his medication, and even though he could not make a doctor’s appointment, cook a meal, and literally could not form a complete sentence, his wife could not access help.  Again, in theory, I do not believe that someone with cognitive functioning has to be relocated, or should forcefully be relocated.  In fact, I have spent the last 10 years of my career advocating for the legal protection of seniors with cognitive disorders to ensure that their rights are protected even if they are deemed inapt.

My point is this: our “system” only looks at the rights of the patient and seems to ignore the rights of the caregiver.  In the situation I just described, the spouse was literally falling apart.  She could not sleep, eat, endured frequent bouts of verbal and physical aggression (he threw things at her) if she tried to assist her husband and redirect him.  As a result, she told me she would rather, “walk into the river,” than continue living in this stressful situation.  She was a senior herself and was at risk of having severe physical and mental health problems if this situation was not rectified.

She had asked for help from everyone: the police, the physician, the local community agency, the local doctor’s clinic, and myself, a private social worker.  Still, no one would take responsibility and “place” him.  The police said he had to be caught drinking and driving.  His wife prayed that this would not happen AFTER he had been in an accident and hurt himself or someone else.  The physician said he needed to be relocated into a full care facility, but he had not helped the spouse in organizing it and refused to write a letter requiring a hospitalization at least for an evaluation period.  The community agency said the patient must consent to move, even though he was deemed inapt, and the clinic said to drop him off at the hospital, a place where he could just walk out.

What was this caregiver to do?  She literally had to put her husband in her car and drive him to the hospital and say, “I cannot care for my husband anymore.”  Then she must hope that he was admitted and the hospital “force” him to stay.  Or, she could hire an attorney to petition the court for a forced placement, something for which she did not have the money to do.  This is a huge responsibility for a loving wife who was already under tremendous stress.

As a private social worker, I made my pleas with all involved professionals, but my hands were tied as well.  I felt deflated that I was not able to do more than to empathize with this spouse and validate her fear, frustration and concerns.  I told her that her needs were important and that her well-being was just as valuable as her husband’s.  Unfortunately, our system did not innately demonstrate its support of the caregiver.

I write this article as a tribute to all of those family caregivers out there who are in similar situations.  My heart goes out to you,whose needs are not the priority in the “system.”

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