Quirky Personality of the Stroke Survivor: Caregivers Are the Most Important Part

C’mon. You must know a stroke survivor, with 800,000 getting strokes annually, and that number is just for the United States alone! At the very simplest common denominator, this post is for:
* Stroke survivors trying to figure out why they're different from before
* Families/friends trying to understand the stroke survivors' change
* Caregivers who act as a bridge, aka lynchpin, between survivors and families/friends

First, some background. Scientific American's Jon Stone, a consultant neurologist, writes, "Friends and relatives may report a personality change that is hard to pin down. Some of these changes, such as low mood and anxiety, are more likely to be related to a person's feelings about having a stroke than to any harm to the brain." 

But he contradicts by saying (I am the critic, too), "A genuine shift may occur, however, when the frontal lobes sustain damage. The frontal lobes play an essential role in regulating emotion, decision making, and judgment." 

"A stroke that hits the cerebellum," he continues, "can also trigger a personality shift. This brain region is vital to many aspects of executive function. Damage here can bring about disinhibition, which often manifests as inappropriate behavior. Other 'negative' personality changes include poor decision making, aggression, and irritability."

He also says less common are cases of “positive” personality changes, in which people reportedly become happier and even nicer. (I became more compassionate and less judgmental).

The Stroke Foundation of Australia lists changes in personality including inability to do anything, being irritable or aggressive, saying or doing things that seem inappropriate to others, and acting without thinking, and doing things that are not safe or are not appropriate. 

(In my book, The Tales of a Stroke Patient, I escaped from the sub-acute facility, and lived to tell about it, in search of soft-serve ice cream, ignoring safety concerns like traffic and mixed-up directions. Poor decision, right?)

In an article "The Psychology of Stroke in Young Adults: The Roles of Service Provision and Return to Work," written by Reg Morris and published by the venerable National Institutes of Health, the study is recounted that young stroke survivors have more practical and physical needs than old survivors. 

Stroke survivors under 50 years of age were studied, and found that family conflict and loss of home, employment, and spousal dissension were common practical problems. 

In summary: 

Employment loss was rated 80%–90%.

About half of survivors had psychological disorders, mostly depression or anxiety about work, recovery, and childcare.

A quarter to a third exhibited denial, anger, frustration, or hostility.

A majority expressed problems with employment, finances, social participation, and/or sexual problems.

Frustration was a main theme found in survivors under 55 years old, for up to two years after a first stroke. 

The frustration was related to fatigue that affected everyday activities and gender roles. 

Invisibility and "outside the loop" centered around lack of information and consideration of young survivors, a shortage of activities for the younger survivors, and the awareness of their apparent cognitive and yet "invisible" impairments. 

The austere Cleveland Clinic says the loss of a person’s former identity can result in depression, anger, and frustration which calls the grieving process, denial, anger, bargaining, depression, and acceptance, into play.

Some stroke survivors have difficulty with their communication skills following a stroke. They can be categorized in two general areas.

The first is speech disorders, says the Cleveland Clinic, and the second is aphasia, "the loss of ability to communicate normally resulting from damage typically to the left side of the brain, which houses the communication center." It may affect a person’s verbal expression, auditory comprehension, and the person's ability to read, write, and manage numbers.

"Some stroke survivors may have slurred or garbled speech as a result of muscle weakness or incoordination (called dysarthria) or motor programming of speech muscles (called apraxia)."

A Speech-Language Pathologist (SLP) will be on the scene to evaluate the patient’s communication skills and show ways in which the family can help. The SLP will also recommend any follow-up after the survivor is released from the hospital. 

And finally, the most important part in this post. The American Heart Association journal, a study was published and it was named "A Quantitative Study of the Emotional Outcome of People Caring for Stroke Survivors," i.e. caregivers.

In a randomized trial, the patients and caregivers were asked to complete 2 measures of emotional distress. A "regression analysis" was used to name the factors that were associated with poor caregiver outcomes.

Fifty-five percent of responding caregivers indicated that emotional distress is common. Caregivers were more likely to be depressed if the patients were severely dependent.

The study's main goal was to help to identify those caregivers at greatest risk of poor outcomes. 

I could have told you that. Hands down, every profession from street cleaners to neurosurgeons have people in those occupations that shouldn't be there. Yes, caregivers, too. You know someone who shouldn't be what they are if you really think about it. 

When it comes to caregivers, they are the most important of all. They are the lynchpin to find the common ground on which the survivors' antics, if you will, are understood by family and friends. 

It's all up to you, caregivers, because things happen fast in the world of stroke and other brain injuries, leaving the family and friends who come to see them, too soon in most cases,  bewildered and angry, and often times there is no source for that confusion and disarray.  It just happens. You can't blame the stroke survivor, yet many of them do.

So if you're a caregiver, DO YOUR JOB, and that means going the extra mile beyond bathing the poor soul and cooking the meals that aren't high on the priority list. Try to make sense, to the families and friends, of the stroke survivor's behavior. Or any brain-injured person, for that matter.

Otherwise, as I've said to the caregiver, more times than I'd like to count, "Get the hell out!"